Which eating-disorder treatments work?

Last updated on June 14th, 2020

This is the whole of Chapter 12 of 'Anorexia and other eating disorders – how to help your child eat well and be well'. I want you find excellent treatment fast, and not waste time with ineffective approaches! 

Contents show

What are the principles of successful therapies? What should you look for when choosing a therapist or treatment centre? And what are the red flags for poor treatment? I tell you more about family therapy and other approaches, suggest how to work in partnership with clinicians and when it might be better to find a new team. I also highlight what to look for in psychological support for yourself.


The parent’s quest for good treatment

In Chapter 4 I briefly outlined the essentials of treatment for an eating disorder. I want to go into more detail now, as we parents often spend a massive amount of energy searching for effective help. I will tell you about treatments that work, and what’s involved. First I want to acknowledge the situation many parents are as they search for good treatment.

Evaluating therapies, therapists, questioning their methods and skills – these can be greater stressors than the day-to-day work of looking after our kids. We are entrusting our child’s life to others and we need to know the care is excellent.

Leaving one team to choose another is a major decision, fraught with uncertainties. Even the most expensive private treatment providers are unlikely to collect or publish statistics on their outcomes. Sure, their beautiful websites boast the ‘many’ patients who achieved ‘positive outcomes’, but where are the numbers?[1] And what methods exactly are they using?

Countries with a national health service provide free or affordable treatment, and – in the UK at least – your child is likely to get better, up-to-date treatment on the national health than privately. But even in countries with excellent standards, some teams are overstretched and some are still poorly trained. I know of instances where a gatekeeper has failed to diagnose an eating disorder, and parents had to put up a tremendous fight to get a second opinion. If you’re in this type of situation, I recommend you use advisory bodies and all the contacts you have.[2]

In countries without a national health service, such as the US, parents may be glad to have a choice of treatment provider, but often they face difficulties with medical insurance, and many accumulate large debts.

To add to parents’ headaches there’s the problem of distance: all over the world, families are driving huge distances on a regular basis to access treatment or to visit an ill child in hospital.

There is also the pressure of time. Every day that your child restricts food represents ground to regain later and habits to retrain. Prompt treatment gives the best chance of recovery.

In my case I also had to factor in that every therapist my daughter saw reduced her tolerance for therapy. She hated any type of approach where she was expected to sit and reveal anything about herself. I dreaded the day she’d point-blank refuse to try someone new, someone who I felt might be ‘the one’.

When a restrictive eating disorder is in control, you can expect your child to resist anybody offering treatment. If a child ‘hates’ a particular therapist, it might be because the therapist is doing a great job of requesting that food is eaten. On the other hand if you, the adult, feel uncomfortable about any treatment provider, it matters. We need to know that clinicians are competent, we need to be comfortable with them and trust them. I became effective when we got a specialist I really gelled with. Before that I was so frustrated with our (unspecialised, non-FBT) family therapy sessions that I’d schedule support for myself right afterwards.

The bottom line is that counsellors, psychiatric nurses, psychiatrists, nutritionists and general practitioners can unwittingly lead you down harmful routes if they are not highly knowledgeable about eating disorders in children and adolescents.

On a positive note you could already be with an excellent therapist but not yet realise it. For the 11 months that my daughter was in hospital, I had no idea that some of the people sitting silently round the table at review meetings had expertise that would later help us make rapid progress. When my child returned to outpatient services I researched some private treatment options, unaware of how excellent our family therapist would turn out to be, unaware that we were getting access to the best in evidence-based treatment. I also now know that if we had been rich enough to opt for those private treatments, our ordeal would have lasted a lot longer.

Eating disorder treatments that are likely to cause harm

Before I tell you about treatments that have been shown to work, I will take a short detour and mention harmful approaches which, sadly, are still common. They may seem like ‘common sense’ if you’re new to this field, as they reflect the culture we’ve all grown up in. Even among therapists who are committed to evidence-based approaches, it’s natural for beliefs from the old models to occasionally leak through. My hope is that if you understand what’s going on you can seek solutions.

The sad legacy of psychoanalysis

Roughly speaking, the treatment models that were held in high regard in the 1970s were based on the premise that patients were fighting a smothering mother, and that (as mothers and nourishment are interwoven), rejecting food was an unconscious, symbolic and desperate attempt to break free of a pathological symbiosis. Psychoanalysis was the main show in town and the brain research and epidemiological studies available to us now didn’t exist. Psychoanalysts saw families in chaos over a child who wasn’t eating, and they confused cause and effect. They separated patients from their parents (parentectomy) and this was thought to support the sufferer’s battle for individuation. To the patients, it all made perfect sense, as their symptoms defined how they thought of themselves: ‘Choosing what I eat is my way of gaining some control over my life. My parents hate me.’

There are parallels with what’s happened with autism and schizophrenia. When these disorders were poorly understood, parent-blame filled the vacuum. ‘Refrigerator mothers’ and suspicions of sexual abuse were wheeled in to make sense of disorders that defied understanding.

Nowadays there are still many clinicians who will consider that your family is dysfunctional, that your child needs a break from the family, who will request that parents back off, and who curtail or forbid[3] hospital visits. I frequently hear of clinicians who believe that parents have issues with anxiety, depression, control, over-attachment, under-attachment, avoidance, enmeshment. In short, they see us as harmful to our children. I wonder how often that happens to the parents of children with leukaemia.

Many psychotherapists still work from the premise that the illness serves an unconscious purpose and that if the patient can gain insight into what caused them to have an eating disorder, they will be free. The model is that patients are using denial as a protective mechanism. No research has been published to validate this type of intervention.

Clinicians have a genuine desire to treat and truly believe in their methods. Why wouldn’t they? The question is, what’s the evidence?’ Thomas Insel, the director of the National Institute for Mental Health in the US, noted with frustration:

“Many professionals, who have no training in neuroscience, still find a neurobiological approach to mental disorders as misguided and frankly alien to all of their experience. […] In an earlier decade, focusing on the medical basis of cancer and AIDS helped us out of the blame and shame phases of these disorders.”[4]

The tragedy of waiting for motivation

Some forms of treatment rest on the assumption that in order to eat, a person suffering from anorexia first needs to be motivated, or somewhere on a ‘readiness’ scale, or on past the ‘contemplation’ stage within the ‘motivational interviewing’ cycle. This is a Catch 22 situation because not wanting to get better is part of the illness, so therapy can go on and on in an attempt to shift this conviction. When a patient has spent long enough failing to eat through lack of motivation, they are eventually forced to eat in hospital. 

Some people with anorexia do have motivation – adults more so than youngsters. Even though eating is hard they have the motivation to get on with their lives, to resume an interest, to attend a university course, to hold down a job, to be able to have children. When you hear of people who voluntarily took steps to beat their eating disorder, be aware they may have been in their early twenties upwards. After adolescence, people may benefit from more maturity and brain development; perhaps they have become weary of the illness and its effects and want to recover a normal life. They still need help. Self-responsibility can get them to sign up for treatment, but when dinnertime comes round, eating is so awful that all too often, any shred of motivation slinks off, whimpering.

Making it possible to treat children and adolescents without relying on motivation is one of the great strengths of family therapy, where parents take charge of meals.

Tragically, when the only tool on offer is to build motivation, therapists and parents can resort to extremes when nothing seems to work. Watch out for the ‘reaching rock bottom’ principle.[5] It may sound like ‘Let her experience the consequences of her choices, so she learns to take responsibility for herself.’ But it equates to this: ‘Let her not eat. Let her get really hungry and weak and feel awful. Let her mess up her studies and lose friends. Let her experience the consequences of her actions. When she’s reached rock bottom, she’ll finally see sense. Then she’ll want to get better.’

I have talked to weary parents who tried this because they thought they were out of options – such as a couple who let their underweight young adult go trekking in Africa. The outcome of such gambles is always, to my knowledge, that the person hits rock bottom… and stays there, until they are once more made to eat against their will.

The fact that well-meaning therapists and loving parents are ready to use such high-risk strategies tells me two things. First, they don’t appreciate that the longer a patient is malnourished, the harder anorexia is to shift, and second, they haven’t received the information or support to use approaches that are far more likely to work.

The best evidence-based treatment

To choose an effective method you must examine the biggest, best quality trials. The latest expert review of these was done by NICE, the institute which reviews the treatments to be used in England’s health service. England also has stringent standards for outpatient treatment. These are valuable guide wherever you are in the world, and indeed similar recommendations come from professional institutions in many countries.

For more on standards in England, on this site

So what treatment is recommended by this latest review of the evidence?

  • For anorexia and for bulimia, it’s family therapy – the type of family therapy described in this book. Only if family therapy turned out to be ‘unacceptable, contraindicated or ineffective’ should you consider one of the next two best approaches:
  • For binge-eating disorder, the recommendation is for a guided self-help programme, then if necessary, group or individual CBT.

The recommendations from expert institutions in many countries are less up to date, but similar.[6]

Lip service and well-meaning ignorance

What makes a treatment ‘evidence-based’? The strongest evidence – the gold standard of research – comes from randomised controlled trials, in which patients are randomly allocated to receive either the new treatment or a control treatment. The control treatment may be a placebo, or it may be another well-established treatment. These trials are complicated and expensive to run, and given how eating disorders research is seriously under-funded, we only have a handful of those.

Evidence-based medicine is also made up of carefully evaluated results from other types of studies: from the strong evidence provided by meta-analyses and systematic reviews, to the weaker evidence provided by before-and after reports and case studies.

It takes time for a country’s health service or professional associations to review and update their recommendations. And so, official recommendations or standards may fail to prioritise the best treatments, and may advocate approaches which recent research has shown to be far less effective.

All self-respecting treatment providers assert their commitment to evidence-based treatment. Parents need to spot whether that’s window-dressing or the real thing. Indeed there are many reasons why clinicians don’t necessarily stick to the science.[7] One reason is human nature: most of us (therapists included) trust our opinions and suffer from an overconfidence bias. Then there is the time, expense and logistics involved in keeping up with the literature, going to conferences, training a whole load of staff in new approaches and providing them with quality supervision. So you can understand how so many treatment providers – including expensive private centres – keep doing what they’ve been doing for the last few years. Or, as eating-disorders researcher Glenn Waller quipped, ‘There's a lot of evidence that evidence is better than opinion, but a lot of opinion that opinion is better than evidence.’

In most places in the world it is still very hard to find therapists who are competent in family therapy or CBT for eating disorders. Some have a very poor (but unformed) opinion of family therapy. Even among those delivering family therapy or CBT, there are too many who have not had specialist training in eating disorders. They mean well but they don’t know what they don’t know.[8]

Principles validated by research

The successes of CBT indicate that whatever the person’s age and the type of eating disorder, regular meals, weight recovery and cessation of bingeing or purging behaviours are key. For adolescents, the successes of family therapy uncover the following additional principles:

  • Your child hasn’t consciously or unconsciously chosen to have an eating disorder, and they are not the eating disorder. Beliefs and behaviours are driven by the illness.
  • There is no requirement for the child to have motivation to eat or to beat the illness, and there is no requirement for the child to have psychological insight.
  • Families should be treated as a resource, not a cause or a problem.
  • Parents should be empowered to feed their children and normalise their child’s eating and weight, at home.
  • Exposure to food and overcoming fears may be part of how the treatment works.
  • Treatment should be delivered by experienced clinicians, preferably within a team specialising in the treatment of eating disorders.

Family therapies: they’re not all the same

Throughout this book, when I talk of family therapy, I mean a form that is eating disorder-focused and supported by research. There are variations in the approach but they all have this in common: where parents are a resource, not a problem. There is some harmful confusion around words like ‘family therapy’, ‘FBT’ and ‘Maudsley’, so I will explain more now. If you’re in a hurry, just make sure that whatever you’re being offered follows the main principles listed above.

Family therapy at the Maudsley Hospital

In the 1980s, after decades of treatment that separated children from their parents, Christopher Dare, Ivan Eisler, Gerald Russel and others at the Maudsley hospital in south London developed a new type of family therapy specifically for adolescents with anorexia. They made the bold decision that because there was no evidence that parents were harmful, they would use them as a resource in the treatment of their children. They produced the first empirical studies to support family treatment for adolescents with anorexia.

The Maudsley Child and Adolescent Eating Disorders Service continues to be a centre of expertise: paediatricians or child and adolescent mental health (CAMHS) units anywhere in the UK can refer a child to the service for a second opinion or for treatment.[9] For patients who need more than the outpatient service, they offer an ‘intensive treatment programme’ (day care), and also work closely with the inpatient unit at King’s College hospital.[10]

The treatment (named family therapy for anorexia nervosa, or systemic family therapy for anorexia, or FT-AN) has evolved under the leadership of Ivan Eisler and Mima Simic and is described in an online manual.[11] The team also created Multi-family therapy (MFT)[12] where families share strategies that help their child to eat, there are joint family meals supported by therapists, and explorations of the effect of the eating disorder on family life. The team have trained professionals in family therapy and MFT worldwide, and there is currently a program of training for eating disorders therapists within CAMHS in England and Wales.[13]

The origins of Family-Based Treatment (FBT)

Daniel Le Grange, who participated in the early family therapy studies at the Maudsley Hospital, teamed up with James Lock and others in the US to conduct further randomised controlled trials on the approach. They named it Family-Based Treatment (FBT) (or FBT-AN and FBT-BN for the anorexia and bulimia versions) and many call it the Maudsley method or Manualised Maudsley or Maudsley-FBT). To ensure the study’s therapists were consistent, they created a manual[14] (and later wrote a parent’s guide: Help Your Teenager Beat an Eating Disorder[15]).

Nowadays there are differences between FBT and the family therapy used and taught by the Maudsley hospital. And around the world, people are developing variations on the family therapy theme while continuing to use parents as a resource in their child’s treatment.[16] In the absence of studies to tell us if differences matter, we can only hope that they’re small enough that whatever variant you get, you’re in good hands.

The New Maudsley Method: not the same as the Maudsley Approach

Now be ready to be seriously confused.[17] A significantly different approach came out in 2007 in the book Skills-Based Learning for Caring for a Loved One with an Eating Disorder: the New Maudsley Method.[18] In spite of its name, it is not an update on Maudsley/FBT – indeed the book makes no reference to the approach or its authors. New Maudsley encourages a collaborative, slow ‘nudging’ approach that was developed for long-term adult patients. At the same time, parents are urged not to be ‘accommodating’ or ‘enabling’ of their child’s eating-disorder behaviours. Progress relies on the person’s motivation and ‘readiness’ for change within a ‘motivational interviewing’ model, presumably because otherwise the person might drop out of treatment.  A parent who is taking charge of meals and of normalising behaviours (as described in this book) might be labelled a ‘terrier’, and that’s not a compliment.

FBT: the first phase is a rescue operation. New Maudsley, on the other hand, teaches collaboration

To reduce the confusion created by the book’s title, some refer to ‘New Maudsley’ as ‘the skills-based method’ (or even ‘the dolphin book’). It does have similarities to FBT: eating is not optional, parents are (depending on the patient’s willingness) invited to support their loved one, and patients are treated with compassion.

The approach comes from Janet Treasure and her King’s College London team in Guy’s Hospital and in the adult (not the children and adolescents’) service at the Maudsley Hospital. It is intended to be used in conjunction with treatment, rather than being a treatment in its own right. Its focus is on helping staff or parents to support a person, and the team’s research indicates that caregivers cope better after learning the skills. It was devised for patients with severe and enduring eating disorders (SEED), mostly adults who may have been in and out of treatment for five or more years, though plenty of parents also use parts of it with their adolescents (and many of the communication principles are like those in this book).

Family therapy that is not designed for eating disorders

There’s confusion around the words ‘family therapy’. If family therapy doesn’t follow the principles of evidence-based treatment for eating disorders, then it probably refers to general family therapy (such as systemic family therapy). There may be an assumption that the cause of the problem, and the fix, is in the way members relate to each other. There can be parent-blaming. A really old-school family therapist may even believe that having a child with eating problems serves to distract us parents from our own issues.  While the family dynamics is put under the microscope, your child may lose weight, purge and over-exercise.[i] Many treatment centres say they do family therapy, and you may assume they mean FBT, but when you read carefully, it’s about fixing relationships, and these places don’t put parents in charge of food. If you’re offered family therapy that is not specifically for eating disorders and that is not based on the Maudsley/FBT model, read on.

Systemic family therapy versus FBT

Having just warned you that systemic family therapy might be an unpleasant waste of time, I need to tell you it may actually be just as effective as FBT, according to a randomised controlled trial.[20] Let’s be clear: in the trial, the systemic family therapy took a ‘non-pathologising, positive view of the family system, and the current difficulties they are struggling with’ and recognised that ‘the family themselves will be in the best position to generate suitable solutions’. If your family therapy service doesn’t truly believe this, then the results of the trial are not relevant to you. Also important: all the therapists worked in specialist eating disorder services and had an average of 6 years of experience in treating adolescent anorexia.

So how does the study’s systemic family therapy differ from FBT? Well, there is ‘no specific emphasis on normalisation of eating or weight, although if the family raises this issue, the therapist will help them address it.’ I imagine most families would be extremely concerned about the adolescent’s eating and weight, and therefore there may be quite a lot of crossover between the two approaches.

The results? Systemic family therapy is equally effective to FBT in weight restoration and reducing eating disorder symptoms at the end of treatment and at one-year follow-up. FBT leads to faster initial weight gain and significantly fewer days in hospital (policy-makers should note this cuts the cost of treatment by half), while systemic family therapy is more effective with patients with strong obsessive-compulsive symptoms.

Family therapy: the first line of treatment for children and teens with anorexia and bulimia

The best-researched form of family therapy for eating disorders is Family-Based Treatment (FBT) and this book follows its principles. To recap, there is clear evidence that that family therapy specialised for eating disorders should be your first port of call. If a treatment centre is not offering that, they are not up to date and your child will be missing out on a treatment that is twice as effective as the next best approaches.

How effective is Family-Based Treatment (FBT)?

Before family therapy came along, there was no scientific evidence that anything worked particularly well.[21] Then the Maudsley hospital conducted some trials which indicated the family approach worked. A while later Lock, Le Grange and others nailed down a protocol (a detailed manual)[22] for family therapy, called it Family-Based Treatment (FBT) and conducted more randomised controlled trials.[23]

So how successful can you expect FBT to be? First, we need to define success. Since 2010 the trials have set a high bar for ‘full remission’ (close to what most of us consider to be ‘full recovery’). An adolescent needs to be weight restored (or very close) and their behaviours and thinking must be similar to those of youngsters without an eating disorder. With the bar set this high, average outcomes from various studies show full remission in 34 per cent of participants at the end of treatment. With the passage of time, more tend to recover, so the total figure a year after end of treatment is 40 per cent of participants.[24]

Before you lose heart over these low figures, please note that in these studies the treatment time was one year or less. That gives plenty of time for weight restoration and for improvements in thinking and behaviours, but we parents know from experience that it takes longer to get complete freedom from the eating disorder, whatever the method used. Note also that these statistics are for FBT conducted as per the manual. I think skilled and very experienced therapists can do better by modifying details to suit the individual. I can think of another reason why the FBT statistics might be so low. I wonder if for half of the patients, weight gain was halted before they were weight-restored. Everyone’s goal weight was set as 95% of the median BMI, and by definition, half of a population is above the median, and half is below. Many parents report increased success when they seek an individualised target that reflects their child’s needs.

We have much more hopeful figures for ‘partial remission’: 89 per cent of participants recovered to this level by the end of treatment.[25] When you ask how good a treatment is, it all depends on the question you ask.

It doesn’t work for everyone

According to many nation’s professional bodies, and in my opinion, a child or teen’s best chances are with family treatment. But as the figures above show, the approach does not work for everyone. Few treatments in the medical world work for 100 per cent of patients. If FBT or other forms of family therapy aren’t working for you, it’s not a reflection of personal weakness. It means it’s time to try something else and keep reviewing. We’ll look at alternatives later in this chapter.
Research into eating disorders is, truth be told, pretty weak, for such a common and serious illness. A systematic review concluded that ‘there is insufficient evidence to determine whether there is an advantage of family therapy approaches’. But let’s not throw the baby out with the bathwater. I believe that even if you go for individual treatment and even if you accept to step back and not take charge of meals, your child will continue to benefit from some level of support from you.

Family therapy for anorexia in young children

The studies I refer to above are for adolescents aged 12 to 18. It seems that family therapy is also the best approach for young children, who generally have little capacity for the introspection required of talking therapies, and where it is natural for parents to be in charge.[26]

FBT-TAY for anorexia in young adults

A variant of FBT, called FBT-TAY is showing promise for 17 to 25-year olds (‘transition-age youth’ or TAY) suffering from anorexia. It involves more teamwork, more buy-in from the young adult, and less of parents taking charge. All the same, parents are expected to make a commitment to help their child gain weight and normalise eating.[27]

FBT for bulimia

A randomised controlled trial has shown FBT to have an edge over a specialised form of cognitive behaviour therapy for adolescents with bulimia (CBT-A). Both produce similar outcomes 12 months post-treatment but FBT produces improvements sooner.[28]

FBT in those ill for over three years: no evidence

FBT trials relate to patients treated within three years of diagnosis. If your child or young adult has been ill for much longer, there is no scientific evidence to back up the used of FBT. (‘No evidence’, in this case, means ‘it’s not been studied, so we don’t know’. Confusingly, sometimes ‘no evidence for X’ means ‘trials have shown X doesn’t work/isn’t true’). But I know of parents who have successfully used it all the same.

“Our D is now over 21 and was first diagnosed at 16. Three and a half years ago, she had a big relapse. Prior to that treatment was not really coordinated and we had no Maudsley Family-Based Treatment. Since we found our special educator and her Maudsley Approach we have steadily travelled the journey to recovery and still find the Maudsley Approach very valid for an adult child.”

What happens in family therapy?

Parents can easily read both the FBT manual and the manual written by the eating disorders services at the Maudsley Hospital.[29] The differences between the two approaches are small so I will just outline how FBT works. It’s an outpatient treatment lasting 6–12 months (20 to 40 sessions).[30] Therapy team members consist of one lead clinician and a co-therapist. These may be child and adolescent psychiatrists, or psychologists or social workers. They would normally have the support of a consulting team that might consist of a paediatrician, a nurse, and a nutritionist. The main treatment providers are the parents, who are the experts on their child and provide meals and loving support at home.

When you first visit an FBT therapist with your child, the focus will be on weight restoration (Phase I). You take control of your child’s meals and prevent excessive exercise, bingeing or purging. The therapist ensures you and your spouse are consistent in your commitment to helping your child to eat, and clarifies the role of siblings, offering them support as well. After about ten weekly sessions, if the child is close to a healthy weight and meals are relatively stress free, Phase II begins.[31] This is a time when an age-appropriate level of control is gradually handed back to the young person. Sessions may become less frequent – the manual allocates five sessions for this phase. Finally, Phase III (three sessions or so) is about return to normal family relationships, addressing the young person’s life beyond food issues, and planning for the future.[32]

This probably sounds impossibly neat and tidy, but it has to be so when you’re conducting randomised controlled trials. You must control your variables. My understanding is that for many families in treatment now, phases blend in and out of each other, and there is flexibility to meet the needs of each situation.

FBT therapists: who they are and how to find them

Certified FBT therapists have been trained by Lock and Le Grange’s team and are listed on the FBT training website.[33] If your therapists aren’t on the list but say they’re doing FBT, there may be a perfectly valid reason. They may be part way through training and supervision (as ours was), or part of a team in which key people are FBT-qualified. They may be experienced eating disorders therapists who have attended a day or two of training from James Lock or Daniel Le Grange.[34]

A therapist may have taught themselves FBT from the manual, avoiding the considerable travelling, training and certification costs.

Be ready to step in if your therapist allows outdated concepts to leak out. It can take time, self-awareness and supervision for clinicians to let go of the models they’ve used throughout their careers.[35]

“Our therapists were new to FBT. Early on they gave us an awful ‘why did this happen in your family’ session. While I think it was meant to illuminate, it actually caused us all more worry about what we possibly did wrong to cause our daughter's illness. The day our daughter heard me tell her the illness wasn’t her fault, we really began to move forward.”

Should your child like the family therapist?

With FBT it’s important that you, the parents, feel well supported. As for your child:

“My daughter hated her ed therapist at first sight. She would swear at her, storm out of the room. You name it. That’s when I knew we had found the right one. Our previous therapist was lovely but didn’t push my daughter or challenge the eating disorder enough.”[36]

Is it OK to tweak the method?

Earlier I listed the main principles of family therapy. But what about the details? For instance your therapist may give you a meal plan rather than putting you in charge of food choices. They observe a family meal and give you feedback on how you handle it, or they may skip that.

The most thorough research on family therapy for eating disorders was done on the FBT method as described in the FBT manual. Some argue that therapists should use that exact method. Others say that for all we know, some variations could be just as good or even better, as long as we respect the general principles. There’s also a view that the less experienced therapists are, the more they should stick to manuals.

This debate is not unique to eating disorders. Evidence-based treatments are usually set out in manuals or protocols, but clinicians often want to deviate from them. Imagine a top leukaemia specialist telling a parent that in her experience, and in your particular situation, you get better results using a slightly different dosage. No research has been done to prove it, but it’s not terribly different from the standard protocol, and it does offer hope of a swifter recovery.

If therapists use their clinical judgement and experience, and if their adaptions aim to suit individual patients’ needs and preferences, then what they’re doing is ‘evidence-based practice’. The idea is that one size does not fit all. There is a risk that they are unintentionally discarding ingredients that are crucial to the success of the method. Unintentionally, because unless we have a great number of ‘dismantling’ studies (and with eating disorders, we don’t) we cannot know for sure which ingredients matter and which don’t.

The FBT method has been validated as a package but dismantling studies are ongoing to tease out the elements that make it successful. Some of those uncovered so far are: parents take control, parents are united, and parents are non-blaming.[37]

When a therapist changes too many elements, they are flying solo. They would need to collect a lot of data to know that what they do actually works.

As an analogy, imagine you are following a recipe to make a cake. Because your oven door doesn’t close well, you lengthen the cooking time. So far so good – that’s a sound judgement based on your experience. And if you don’t like vanilla, you also know there’s no harm in leaving that out. Now imagine you are the creative type, so you leave out quite a few ingredients and add a few new ones. If your cake ends up like a lump of rock you won’t know why, unless you go back to the recipe and systematically remove or add ingredients one at a time.

Your therapist might be lacking training or rigour if he changes the recipe. Or he may have excellent reasons to adapt it to your child, and when therapists do this and write up the research, the field keeps moving forward.[38]  Our own therapist told us early on that because of the stage we were at, she wasn’t applying FBT by the book but using the main principles. One obvious modification she made for my eleven-year old was to use blind weighing (the manual requires open weighing). This worked for us, and as I look back I appreciate how sensitively she responded to our needs as they came up.

This book you’re reading now is not pure FBT. I aim to keep to the big principles, and to inform you whenever I disagree with elements of the method.

Individual therapies

Cognitive behavioural therapy (CBT) adapted for eating disorders

Cognitive behavioural therapy (CBT) is a common treatment for all sorts of mental  health issues, and there are variants that have been adapted for eating disorders. From here on, when I talk of CBT, I will be referring to one of these specialised, evidence-based forms. (General CBT does not put enough focus on normalising behaviours and on nutritional restoration).

CBT is not as effective as a family-based approach. In England, a thorough review of all treatments led to a recommendation that CBT may be used only if a family approach is ‘unacceptable, contraindicated or ineffective’ (NICE guidance).

The difficulty with CBT, like any individual therapy, is that people need to eat regularly, stop purging and restore weight through their own efforts. Parents may be sidelined. This happened to us even though we had chosen the therapist with care. We were reporting on our child’s difficulties with food and exercise, yet in four sessions the professional told my girl she was well, could stop weight gain, join a gym and end the therapy.  It took a while to undo the damage.

However in wise and expert hands, CBT may –like other types of individual therapy – be useful in finishing off aspects of the treatment which might not have been successfully addressed in family therapy.

If you are considering CBT for your child, I recommend you read more about pros and cons on my website here.

Adolescent focused individual therapy (AFT)

Another validated one-to-one therapy that requires patients to take charge of their own recovery is adolescent focused individual therapy (AFT). It does not seek insight into causes but focuses on the young person’s ability to change their own behaviours, restore weight, and develop emotional awareness. Parents only have a supporting role.

Lock and Le Grange, who developed FBT, also wrote the manual for AFT. From their main anorexia study comparing the two treatments, they found that for most youngsters FBT works better than AFT – twice as well. But FBT doesn’t work for everyone, so they concluded that ‘AFT remains an important alternative treatment for families that would prefer a largely individual treatment.’ [48] And indeed the recent NICE guidance for anorexia in young people[49] puts this therapy (which they name ‘adolescent-focused psychotherapy for anorexia nervosa’, or AFP-AN), on a par with CBT: it may be used if – and only if – a family-based approach is ‘unacceptable, contraindicated or ineffective’.

Earlier I wrote some words of caution around CBT, and you should use similar precautions with AFT. You can read a lot more about it on this website :

More individual therapies for adults

I’ll mention more therapies in case your child is offered them, as they are only validated for adults. Worldwide research led NICE[50] to recommend just three approaches for anorexia in adults: CBT for eating disorders (which I described earlier), Maudsley Anorexia Nervosa Treatment for Adults (MANTRA), and Specialist Supportive Clinical Management (SSCM). If none of those three are acceptable or effective, the next best option is eating-disorder-focused focal psychodynamic therapy (FPT). I hope that in years to come, adapted forms of family-based treatment will be available to over-18s – there is not enough research to this to feature in official recommendations.

For bulimia and for binge-eating disorder in adults, NICE recommends a guided self-help programme, possibly with brief supportive sessions, and if after four weeks this proves unacceptable, contraindicate or ineffective, then CBT is to be offered.

Psychotherapy as an adjunct to family therapy

In the FBT model, psychotherapy isn’t normally required, or if it is it comes much later. Psychotherapy on its own is unlikely to resolve an eating disorder – it should only be used as an adjunct. The Royal College of Psychiatrists in the UK writes:

“It is not psychological therapy that will turn the course at this point, but […] skilled nutritional rehabilitation.”[51]

Most people with anorexia have some degree of anosognosia, a brain condition that makes the person unable to perceive that they are ill and need help, or unable to perceive the severity of their situation. With any eating disorder, habits, brain wiring and physiological effects are strong, and talk is not the solution.

Your child may benefit from psychotherapy if they struggle with anxiety, depression, OCD, or with life in general. As these difficulties are often manifestations of the eating disorder, it’s usually recommended to go through family-based treatment and only bring in psychotherapy if issues persist. Another reason to wait is that psychotherapy has limited effectiveness on a malnourished brain.

“When my daughter was at her lowest weight she was OCD for sure, and bipolar was suggested, but my wife and I really put the screws down not to give her that diagnosis in her chart because it would follow her around for ever. Sure enough, once we passed a certain weight on the road to restoration it was like her brain rebooted.”[52]

Sometimes comorbids do need attention, though:

  • If they persist after the eating disorder is well under control, especially if they preceded the eating disorder. One researcher says that untreated OCD increases the chances of relapse by 75 per cent. [53]
  • If they are making it impossible to treat the eating disorder (too much self-harm or suicidality, too much time spent in rituals). In this case, some youngsters get medication or psychotherapy for their comorbid while family therapy for the eating disorder continues.

While most young people are highly resistant to psychotherapy, we should pay attention when someone desires psychological help early on. Some youngsters acutely feel that we have forgotten they are living, suffering human beings. Disturbingly, psychological support can be refused on the basis that it is not family-based protocol. Thankfully, many therapists are ready to assess individual needs and opportunities. I am thinking for instance of a girl who had been traumatised by fat-bullying in school. She did well from engaging in EMDR therapy at the same time as she was renourished.

If the young person is willing to engage, there can also be a place for one of the psychotherapy approaches after family-based treatment has run its course. Some young people continue to be burdened by an eating-disorder mindset after discharge, even while their weight and behaviours are well under control. There is a sense they are neither relapse-proof, nor fully recovered. At this stage, psychotherapy can impart tools for distress tolerance and emotion regulation and can help the young person get back on track with their development. I recommend that at least some of this work is done with the family, so that parents can support the use of the tools in real-life situations. [54]

All the clinicians involved should be working as a team with each other… and with you. Later in this chapter I will discuss what you can do when your child gets individual therapy and you are excluded.

Therapists don’t have your parent-power

Some parents need to be reminded of their own strengths as loving, dedicated, wise mothers and fathers. They are far too quick to abdicate their power in the belief that only a therapist can fix their child’s mind. Yet it is a healing balm for your child to hear you saying, ‘Tell me more. I’m interested. I care. I feel for you.’ Even when they reject you, and even when all you can do is non-verbals (and I help you with communication in Chapter 14). Sure, a trained professional may contribute something we can’t provide, but therapy is only one hour a week, outside of normal life. Our children most need to be loved and supported by their own parents. There’s no relationship like it. If you bring to mind your own parents, doesn’t their love or withdrawal still do something to you? Whether or not you try psychotherapy for your child, remember your own precious powers.

Why would your child engage with therapy?

I have supported parents who use the family therapy approach and are also delighted with the individual therapy their child is receiving, usually for depression or anxiety. The child engages well with the therapist and learns new ways of coping with life’s challenges, so that the urge to restrict or binge fades away. Sometimes old traumas are revealed and processed.

For most, though, to say that a youngster may not engage with psychotherapy can be an understatement. Commonly, they blank the therapist out, they’re rude, they have to be dragged into the building, and they run away. Whatever your child is doing, it’s probably normal, and for all we know, is a sign of great sanity.

My daughter’s psychotherapists revealed that even without an eating disorder, most of the children and adolescents they see won’t engage with them. Without a therapeutic relationship, how can individual therapy succeed?

It seems to me that youngsters are intensely private. They fear they will be judged. They feel awkward and ashamed in front of a stranger, and prefer baring their soul to their loving parents during unscheduled moments of connectedness. They hate the abnormality of being pulled out of school and in my daughter’s case, they hate the ugly institutional rooms, with plastic toys piled up in the corner, and women’s magazines (‘Get beach-body ready!!!’) in the waiting area.

If in doubt, use this reality check: are therapy sessions making your child eat as required? If the answer is no, why bother?

More on this website : Don’t beat up your child (or yourself) for failing in spite of therapy

How to identify effective treatment providers

Given that family therapy and other validated treatments may not be available to you, that no particular method is effective for everyone and that for all we know another method out there may be just as good or better, how do you choose a therapist, clinic or hospital? Or if you country has a national health service, how satisfied are you with the treatment your child is getting, and would less harm be done by walking away from it?

The no-brainers

Any service that isn’t putting specialised family therapy top of their list is only paying lip service to evidence-based treatment. The website’s photography may be gorgeous, but what’s behind the words?

A checklist to assess a treatment provider

If you’re assessing a potential therapist (or wondering whether to stay with one that you’re unsure about) I highly recommend Dr Sarah Ravin’s short blog: Red flags: how to spot ineffective eating disorder treatment’.[55]

If the red flags are not there, you could consider the following questions, directly or indirectly, as you talk with the therapist. Have a thorough conversation, bearing these questions in mind.  In case you have skipped previous chapters and are in a hurry, I indicate the desirable answer in brackets. Note that further on I also offer a checklist to assess an inpatient unit.

  • What treatment will you give my child? [Family therapy/Family-based treatment, in the case of anorexia or bulimia]
  • If not family therapy, why not? [At this stage, the only valid reason would be if you are unwilling or absolutely unable to take an active role]
  • What will be our role (as parents) in treatment? [You will initially take charge of meals and of normalising behaviours (phase 1), then you will cautiously steer him to take back age-appropriate control (phase 2) and help him step back into a full life (phase 3)]
  • Will our child have to regain the weight he lost? [Yes, and more to account for expected growth]
  • What is the target weight? [We won’t know until we get signs of a healthy body and a more normal mindset]
  • Can we let our child be a little bit thin so he won’t keep wanting to diet? [No, we’re aiming for health and total recovery]
  • Can we let our child exercise/purge after meals, as it relieves her anxiety? [No]
  • He’s used to small meals so can we reassure him they will stay small? [No, rapid refeeding is best, and I’ll help you make it work]
  • Should I be glad that she’s banned junk food? [No food is ‘junk’. We’re aiming for freedom to eat without rules.]
  • Will you give us a meal plan? [With FBT: no, but I’ll guide you if you’re unsure.][Also fine: yes, but only at the beginning, and the plan gives you plenty of flexibility]
  • Can my child recover totally? [Yes]
  • Did we cause the eating disorder? [No, there are many interlinked causal factors – genetic, biological, environmental – and scientists don’t yet understand causation. But we can successfully treat anyway.]
  • How can I stop her being so selfish and manipulative? [We will work on unconditional acceptance of your child, as it’s the eating disorder that makes her this way for now.]
  • Will parents be included in all sessions? [Yes – because the therapy is about guiding parents to treat their child]
  • Will you provide my child with individual therapy for her anorexia/bulimia and why? [FBT: no, unless your child still has difficulties after the eating disorder is dealt with.][Also sometimes fine: yes, in conjunction with family therapy, because of the comorbid OCD/anxiety etc.]
  • If you’re proposing CBT, why, and can you describe the approach? [See earlier how CBT for eating disorders differs from general CBT. CBT is the go-to approach for binge-eating disorder.]
  • If you propose individual therapy, how will we parents be kept in the loop? How can we inform you of behaviours we see at home? [If the therapist is vague about your involvement, beware of getting disempowered]
  • My child also has autism/OCD/depression/anxiety. How will you deal with it? [Discuss how attending to this will affect eating disorder treatment. In general, eating-disorder treatment comes first]
  • Will you work on giving my child insight and motivation? [That would delay the real work. Recovery doesn’t require either.]
  • What if my child is in medical danger, or needs psychiatric medication or hospitalisation? [We are a team, each with our specialties, and we work closely with you and each other]
  • Will you help me liaise with the school, the athletics club? [Yes]
  • What support will you give us as parents? [Mealtime coaching or support visits at home would be good, though uncommon. Sessions without your child can be very useful. Sessions with other families can be supportive.]
  • Who trained you in family therapy? [Ideally, one of the key names in the field, and for more than the basic 2 days]
  • What are your qualifications, your experience, ongoing training, experience, supervision? [56] Are you a member of eating disorders associations? Have been involved in any published research? How do you keep yourself up to date? What books or online resources do you rate highly? [Certification in FBT is quite rare, so consider it a bonus]
  • What led you to work in the field of eating disorders? [Looking for a wise, compassionate attitude and commitment to total recovery.]
  • Have you ever suffered from an eating disorder yourself, and if so do you still experience symptoms? [Checking the therapist will stay focused on your child’s recovery]
  • How many eating-disorder patients have you treated recently; how many completed the whole course of treatment; what were the outcomes after 1 or 2 years? [A tricky one, as very few clinicians collect or publish any data]
  • How soon can you see my child? [If a private clinic isn’t in a hurry to see a child who is losing weight, they don’t appreciate the benefits of early intervention]

I suggest that at first you check out a therapist alone, to protect your child from hearing anything harmful. In my case I also didn’t want my daughter to develop an intolerance to therapists.

You could also go onto online forums[57] to ask about other parents’ experiences about a particular treatment centre.

Finally, trust your gut. I would be concerned about the therapist’s effectiveness if I had a sense of being bossed around, patronised, hurried, judged, excluded, not listened to or not respected, if the therapist was evasive or authoritarian, and if it took tremendous perseverance to get answers. On the other hand, I wouldn’t let a warm, compassionate exchange distract me from the other, more scientific requirements.

We’re not looking for perfection. Some help may be better than no help. As long as the therapist doesn’t disempower you in the eyes of your child, there is plenty you can do yourself.

Therapists who previously had an eating disorder

Many eating disorder therapists come to the field because of lived experience. Some disclose it, and some don’t. Some only disclose it if they sense this will benefit their client (such as instilling hope).[58]

Some therapists make their eating-disorder past their unique selling point. Avoid them if they are attached to the one single approach that made them well (commonly, a spiritual epiphany), rather than evidence-based treatment. 

As a general rule (I can think of some wonderful exceptions) a therapist needs to be truly recovered. Otherwise they might collude with some aspects of the illness. Our children need a strong, courageous hand to lead them through all kinds of challenges. They need someone who is comfortable with challenging eating disorder behaviours.

We also need therapists who, unlike our children, have a positive attitude to food and to body diversity. There are still clinicians who endorse a patient’s desire to stay thin, irrespective of symptoms and behaviours. I’m also thinking of a therapist who told her young patient, ‘Don’t worry, it will be easy to maintain your weight. You’ll just make sure you don’t eat too much. That’s what I do.’

Should you ask a therapist if they have suffered from an eating disorder and are now free of eating-disorder thoughts and behaviours? I haven’t, but it’s a valid question if you’re non-judgemental and you make it clear your concern is for your child’s treatment.

Does a therapist seem to be a bit too much into exercise (I know of one who attends the gym five times a week)? Do they consider some foods ‘naughty’? Do you see them eating ridiculously small portions (a common sight, I am told, at professional conferences). When someone who is all skin and bones says they have recovered from anorexia, I have my doubts. On the other hand, there could be any number of reasons for someone having a large body.

A recovered therapist may be fantastic, and I know a few of them. Conversely I don’t think their experience is an essential asset. Any good therapist should have developed both experience and empathy. There’s no need for the podiatrist who treats my mum’s feet to have ever had foot problems of her own.

You can be sure that your child will be scrutinising the therapists’ bodies. My daughter was cared for by a number of people in very large bodies, and I wondered if that would be an issue for her, but it never seemed to be. What affected her was how they treated her. One of her favourite, most motherly nurses had a generous, cushiony body specially designed for hugging, something that gave us both great delight.

Clinicians rich in human qualities

My daughter got meaningful support from a variety of nurses and specialists, irrespective of their training. One of her hospital therapists had a psychoanalytical background, which to me might normally be a turn-off. Yet I cannot think of anyone I would want more in times of need: she could make a desiccated twig flourish, such is the power of her empathic manner and the quiet wisdom she embodies.

There was also the nurse on the ward whose hugs were pure therapy. I remember weeping with gratitude when she promised to comfort my little girl on one particularly awful night. And then there was the youngest of all those nurses, who was one of the wisest, kindest, most empathic people I’ve met, yet she was unqualified and no more than 25 years old.

It’s no coincidence, I’m sure, that the staff who were wonderful to my husband and me were also the ones my daughter loved the most. Their humanity lit up everything in their path. I believe that their life-affirming influence lives on within my daughter now. It certainly does with me.

Disagreements with clinicians

Parents who read a lot can soon become more knowledgeable than a clinician who has not specialised in eating disorders. They may also be more up to date. There are big names who have treated teens for decades, and only have a vague and incorrect idea of what family-based treatment is. And there are therapists who say they ‘do FBT’ after just a few hours of introductory training.

You might appreciate the support of your team overall, but strongly disagree with one aspect of the treatment. That happens in a field that is moving fast. The clinician may feel threatened: they are the expert on the treatment, and who do you think you are? You are conscious that you don’t know what you don’t know, so at first you genuinely want a discussion. But the therapist is not hearing you. You hesitate. Perhaps you go along with their instructions for a little while. Eventually you have spent a gazillion hour on research, plus, you can see how your child, who was doing so well, is now regressing. Your team says they are ‘doing FBT’, yet when you speak to parents in another part of the country, with another team who is also ‘doing FBT’ you discover those parents got the opposite instructions.

Make an appointment without your child and discuss the issue. You are part of the team and you are officially an expert on your son or daughter. You may bring in research papers, links to conference videos, quotes from respected experts who founded or researched family therapy. I warn you though, some parents are very frustrated this has made not one jot of difference. The clinicians argue that the evidence we present them with does not apply to our child, or is not strong enough, or that their experience goes the opposite way. ‘Evidence’ becomes a weapon to beat each other up with. Presumably the issue is that we are trying to use logic on something that has become a highly emotional issue for all parties.

It may help to keep on the table the three foundations of ‘evidence-based practice’: the evidence, the clinician’s expertise, and your family’s needs and experience. You are an expert on the latter. Describe what’s happening at home and use your well-practiced skills of compassionate persistence to persist with your request. You can make change more acceptable by proposing a trial with a review date.

And sadly, nothing may work. Some parents find that treatment is so ineffective – or even harmful – that they wonder if it’s time to cut their losses and run.

Dropping unhelpful treatment

One seemingly trivial reason why we stay with a therapist in spite of everything is that we want to be nice. Sometimes we feel sorry for them.[59] We appreciate that they mean well and have worked very hard for us. We imagine they are so vulnerable that we will hurt their feelings if we tell them we don’t want their services any more. Nobody’s needs are met when you’re nice.

Sometimes we put therapists on a pedestal and we fear that if we don’t behave like compliant children, they will judge us. It shouldn’t matter what people think of us, but humans are social animals. Sometimes we’re so cross that we thrash about, blame and complain, but we’re unclear about what we really want.

If your treatment team has been blaming you and excluding you, I’m guessing that your self-confidence is at an all-time low. You’ve been consistently told you’re a worrier, that you’re over-controlling, and that your child would happily eat if only you stopped trying to feed him. Your spouse may be telling you that the doctors know best, but your gut begs to differ. Perhaps you are indeed entirely wrong. On the other hand there are many examples of parents’ instincts being validated after a move to a new therapist.

As you toy with the idea of walking away from a treatment provider, you may feel extremely vulnerable, alone, and somewhat reckless. Yet if you know that these people are letting your child get worse or are undermining your own work, part of you knows it’s crazy to stay with them. What might be holding you back is the possibility that they’re better than nothing. Do you fear that if one of them took the huff they could make it more difficult for you to get access to other health services? Are you worried about burning your bridges and being left stranded if your child gets worse? We certainly felt quite vulnerable whenever, for any reason, a relationship with a therapist came to an end, and it was good to know we could get prompt support again if we needed it. You’ll need to check the situation where you live, but where I am, refusing one type of treatment would not remove the safety net; a child would still be admitted into hospital if he needed it.

If you’re struggling with doubts, seek out parent-support groups to help you consider your options. You have to make these decisions for yourself, but it helps to learn from other people’s experience and you may clarify your thoughts by having people hear you out.

No good treatment locally?

If you can’t find a good therapist locally, there are other options. Some parents travel huge distances for a few days of intensive learning and family therapy.[60] On my website I list the certified FBT therapists who can provide treatment via video call.[61] If you’re in the UK your GP may acknowledge that treatment isn’t meeting your needs and they may release funds for treatment elsewhere, either at an NHS centre of excellence or a private clinic.[62] If this happens, make sure you’re not going from the frying pan into the fire. Do your research.

Finally, some parents bravely go it alone.

Family treatment the DIY way

If going it alone seems daunting, be aware that you are in good company. You may benefit from reading about the experiences of people who have done this. [63]

If you’re at the stage of even considering this move, I’m guessing you’re already extremely well informed and very determined. At the same time, you’re going to need support. At the very least, you’ll need a doctor on board to monitor your child’s health. In the UK we can choose our GP, so switch if you’re not happy with the one you have. You need someone who’s either well educated in eating disorders or who’s willing to learn.

You’re also bound to have all kinds of practical questions: should you let your child choose her flavour of yoghurt? Should you weigh her? Should you let her go for a sleepover? You can benefit from the experience of other therapists and other parents from all over the world through the internet.[64]

Here’s from Dr Rebecca Peebles:

“I believe that bad therapy is worse than no therapy. So when I get a call from parents … if they cannot access someone who can work with them and their family in a respectful manner then I guide them to Lauren Muhlheim’s book, Eva Musby’s book, Laura Collins and FEAST and… That’s what I guide them to and I try to empower them to pull themselves up and try to do this more on their own. I know that’s really scary, and I’m not saying it’s ideal but it’s better than working with a crummy therapist who undermines you.”[65]

Parent-coaching, home support and day treatment

Some children need a trusted adult with them at all times to prevent bingeing, purging, self-harming or suicide. This task can fall on one parent, who may become starved of sleep, company and stimulation. Parents need support for the extraordinary work they are doing. They rarely get it.

When we can’t manage to feed our child at home, most of us have only one option: hospitalisation. In my daughter’s case, 11 months of it. Sometimes, a child needs inpatient treatment for a short while because their illness is just too strong to treat at home. Parents still need to learn how to take charge, though, because no treatment is ever completed in hospital.

In the US, eating-disorders units may offer a continuum of care: outpatient (OP), intensive outpatient (IOP), day treatment, partial hospitalisation (PHP) and inpatient (IP) or residential. In the UK we would dearly love this range of options, or at least something in between home-caring 24/7 and inpatient admission.

Everything hinges on whether we can feed our children safely at home. In Family-Based Treatment (FBT), the second session is a family meal in the therapist’s office. Some family therapists (including Eisler’s team at the Maudsley service) choose not to do this – and they give compelling reasons for their decision – yet I appreciate the opportunity for parents to gain confidence and pick up some tools to begin feeding their child. Shortly after my daughter was diagnosed, an office meal was scheduled on a day I had a work commitment. I have no idea if the whole of the following year would have been different had I attended. It never occurred to me to ask for another chance.

In the weekly sessions of the refeeding phase of FBT, there is normally a lot of attention given to how meals went, who said what, what helped and what didn’t. The intention is to give families tools to use once at home. In our case this wasn’t hands-on enough to help.

We would be able to care for our children at home so much better if outpatient services offered more home support. What we need, what we yearn for, is an experienced person to sit with us for a few meals to observe us and coach us. Sometimes we just need to break a deadlock, to get one success. If we still can’t get our child to eat, we want an expert to come in and help us get our child to eat. And we need this expert to be an expert in eating disorders, someone who is part of the team, not a general health worker who doesn’t understand eating disorders.

We asked for coaching at the start of our daughter’s illness, then again at regular intervals. Eventually the eating disorders unit offered to come and support us over a few meals. After four lunches we’d learned everything we’d been trying to learn during 11 months of hospitalisation and countless family therapy sessions. Those four sessions gave me a big chunk of what’s in this book.

Health service managers, take note: I reckon that those visits cost the service a total of six hours. Six hours, versus thousands of hours of therapy and nursing care.

If I were king, every family hit by an eating disorder would receive coaching and support at home.

Home support and day care are available in some countries or regions, and not in others. Ask, and when you get a no, don’t give up. Ask other agencies too. You might get help from an organisation in your area that oversees healthcare or social-care services. You might get home support via psychiatric services. I am not advocating that you get other people to take over feeding (except to give you a break from time to time); it’s best for the long term if you are empowered to do it. But if staff visit your child at home or take her out, it may be enjoyable for her while giving you some respite. A private care agency may provide a regular person you all like and you might find it surprisingly affordable. Social work will tell you what’s available. They may give you access to carers or to funds. Also, check out non-profit organisations whose mission is to care for carers.

I offer coaching by video call.[66] My experience is that it doesn’t take much to support disempowered parents to become supremely competent.

Hospitalisation and inpatient treatment

Given that home support or day centres are extremely scarce, thank goodness for the safety net provided by experienced inpatient units.[67] We may all hate the idea of our precious children being hospitalised, but for some of us the decision becomes a no-brainer.

An inpatient unit is a place where a child can be rescued if she needs to be medically stabilised, or when she’s very undernourished and isn’t having food or fluid, or when she’s self-harming or suicidal, or when you cannot supervise her constantly to break a purging habit. Sometimes, if the staff cannot get a very ill child to eat any more than the parents can, they may use a nasogastric tube and provide constant supervision to ensure it stays in place.

I hope you can get your child into hospital if that’s what she needs. Some parents struggle to get their child inpatient care for an eating disorder other than anorexia. Sometimes hospitals only admit or re-admit anorexic patients if their weight falls below a certain BMI threshold, independently of all the other symptoms or behaviours. I am not even close to understanding this policy.

There are many reasons why hospital staff manage to get youngsters to eat when parents can’t. Your child may eat because she respects the authority of strangers or because she’s embarrassed to make a scene in front of others. Her fear of being tube-fed or detained against her will may trump her fear of eating. Unlike us, nurses are not on an emotional rollercoaster 24/7. They have built up many hours of experience with a range of patients; they get coaching, support, teamwork, and sleep. In spite of all this, they notice how their emotions can occasionally flare up around a child who’s not eating, and they are quite awed by what parents do.

Eating disorders inpatient units

In the old model, eating-disorders treatment takes place in a specialised eating-disorder unit (or a psychiatric ward that has some eating-disorder beds) for several weeks or months. The unit gets youngsters to gain weight (tube-feeding if necessary) and parents breathe a sigh of relief. People are discharged when their weight is restored (or close to restored), though some units also wait for patients’ mental state to improve. The unit does all the work and all the major decision-making. There may be an hour’s weekly family therapy and parents are invited to review meetings, but on the whole, they are onlookers. When the person returns home, she is expected to resume normal life as though she was recovered. Yet she’s had no guided practice at normal living, she still fears food and weight gain. So she restricts. She may, of course, have planned this all along – she only gained weight to be allowed home. Parents may have no more power to help her eat than first time round – when they try, she may protest that the hospital didn’t serve such big portions or never made her eat cheese. Youngsters then get a revolving door situation, getting re-admitted into an inpatient unit whenever the eating disorder gets too strong.

Inpatient units, increasingly, are shifting toward a more family-orientated ethos. The trailblazers make parents (and outpatient services) active members of the treatment team, along principles of family-based treatment.[68]  They support increasingly long periods at home. This way, when the child is finally discharged, she is used to being skillfully accompanied by her family and the transition is more likely to be successful. Consider for instance that traditionally, dietitians in hospitals devise meal plans in collaboration with patients. The whole ethos changes when it is the parents who make the choices, and when parents are supported to help their child to eat in the unit. With this way of working, patients may be discharged much sooner, because parents have the competence to take over and take care of the transition.

Medical (paediatric) wards

Finally there is a move to using medical (paediatric) hospital wards more skillfully. For years, paediatric wards have not known what to do with a child who won’t (can’t) eat – their job, as they saw it, was to treat kids with asthma or heart problems, not kids with scary mental health problems. This made them eager to pass the child on to a mental health unit as soon as they’d achieved medical stabilisation. This continues to be the situation in many places, and parents tear their hair out because nobody is sitting by the child helping him to eat and checking that he doesn’t bin his food. Staff may also make insensitive or unhelpful comments as they have no education, and no guidelines, relating to eating disorders.

Now some paediatric units have protocols (pathways) telling them exactly what to do, in collaboration with outpatient eating-disorders services, in order to intervene for a few days (possibly two or three weeks at the most). With this model, parents are involved and supported in the ward, so that as soon as their child’s health is stabilised, they are able to resume care at home. If all goes well, the child will never need to go into a mental health or eating-disorders unit, because the family is learning and being supported all along (as a result, some inpatient mental health units are finding they now have very few eating-disorder patients, which pleases everyone except, I imagine, the business manager). This model gives a major role to outpatient family therapists, as they are a crucial resource to both parents and the paediatric ward.

Tips: when your child is in an inpatient unit

My husband and I still remember our amazement and relief when we learned that our daughter, within 20 minutes of admission, had calmly eaten a packet of crisps and drunk a glass of milk. It’s a wonderful feeling, and thank goodness for safety nets provided by competent units.

There are huge variations between services, and it’s a big worry for parents when hospitals don’t treat them as valuable members of the team. It means that you have to be constantly on the ball, informing, requesting, checking and complaining. When your child enters a unit, don’t assume anything. Be vigilant. But also recognise when your kid is in safe hands and it’s OK for things to be ‘good enough’.

Here are some pointers to help you work out how to manage hospital-related issues.

  • Be aware that some treatment units believe in punitive or highly regimented approaches, so do your research.
  • Your child will be surrounded by others with eating disorders or other mental illnesses. Ask what measures are in place to prevent patients sharing weight-loss or self-injury tips with each other. How are children shielded from other children’s distressing behaviour?
  • In our case, when another child with anorexia joined my daughter’s ward, the two were never left on their own to share tips and tricks. When some of the children had violent outbursts, the nurses would promptly take the other kids into another room. In spite of these precautions, my daughter does seem to have learned more than I would have liked about the traumatic lives of other children. And I didn’t love how she copied some of the other kids’ raucous style. Yet in spite of 11 months of this, none of it stuck. And being exposed to other children’s distress wasn’t all bad – my daughter developed a lot of kindness and understanding for human vulnerability.
  • Ask the unit what their aims are (Safety? Medical stabilisation? Weight recovery? Some level of mental recovery?) How they will decide that your child is ready for discharge.
  • If the unit is not facilitating rapid weight gain, why not? (Too many units go softly-softly, hoping to build the patient’s motivation.)
  • Even if hospital isn’t perfect, consider the whole picture. Is your child safe and gaining weight? Use the time and space to recover and to get yourself ready to take over again.
  • The hospital may introduce systems you disagree with. For instance, knowing what I know now, I am sad that my eleven-year old had weekly meal-planning sessions. Within the first 20 minutes in the ward she’d managed to eat what she’d been given, so why start negotiating with her? I believe those sessions deprived her of a golden opportunity to get her to quickly expand her range of foods.
  • You will fight some things, and you will accept others because the main thing is that your child is safe, gaining weight, and you can’t sweat the small stuff. Once your child is back home, you can stage-manage a clear takeover, refusing to be bound by the way the hospital did things.
  • The hospital should be working to give you the competence and confidence to feed your child at home as soon as possible, and to rebuild your relationship. You should have practice on the ward, and your child should come home for increasingly long spells.
  • Things might have been a lot faster for us if the health service had supported us with meals at home. It might have saved my daughter from being in hospital so long – and maybe she needn’t have gone in at all. When she’d been an inpatient for a few weeks, the staff helped us feed her in the ward, but it was still hard for us to get her to eat when she had home visits, and all we could get was phone support. See if you can request more, especially if you live close enough to the unit. Here’s a great example of how a hospital supported a family I know: when the child came on home visits, a nurse came to support each meal until the family got the hang of it. This also reinforced the ‘food is medicine’ message: if the child didn’t manage a meal, the nurse was ready to take her back to the ward right away.
  • It grieves me when units make home visits conditional on the child managing all their food or gaining weight. In their effort to incentivise, they are not just punishing the child. They are disempowering parents and delaying an essential part of the treatment.
  • We live close to the hospital and don’t have other children, so it was easy for me or my husband to go in every day. For some people the journey takes several hours, and one parent ends up staying there while the other looks after the rest of the family. For some parents, sadly, phone contact is the only option for days at a time.
  • I imagine that some of you will find it very distressing to think of your child being hospitalised for as long as our daughter was. Had I known it would take nearly a year, I’d have been horrified. Could it have been shorter if the unit’s ethos had been different? Quite possibly. But a long stay may be necessary when a child’s mental condition is particular severe, and that’s nobody’s fault. I have a friend whose daughter only started eating after a three-year inpatient stay with tube-feeding. The parents found ways to make this long period meaningful and rich with loving connection.
  • I’m incredibly grateful that our hospital cared for our daughter while her opposition to us was extreme. If she’d been discharged before we could feed her she would have kept dipping back to critical levels and having to be re-admitted.

Parents can be overwhelmed by all kinds of emotions when their child goes into hospital. For some parents, there is little relief – there are new types of worries, decisions, frustrations. My own feelings weren’t necessarily what you might expect.

  • When the possibility of hospitalisation was first raised, I was horrified. My position was ‘over my dead body’. Then I learned more about what hospital would be like, and realised it might be a place where my daughter would feel safe and well cared for – and this turned out to be the case.
  • The speed at which anorexia gained ground was terrifying. So a few days before our daughter was due to be admitted, we were desperate for her to go in even sooner. This was a week when getting half a glass of water into her by mid-afternoon was a major victory. We believed the hospital was going to save her life, and that’s what it did.
  • As soon as we set foot in the ward with our daughter, we saw that she would feel well cared for. The staff acted like real human beings. Our daughter thought the place looked wonderful (to us it was old and shabby and rather depressing). This is what she wanted. As a result we were able to drive away without feeling torn, worried or guilty.
  • Unlike my daughter, many children resist being in hospital. Sometimes they plead to be taken home. Sometimes they stop engaging with their parents, convinced they’ve been abandoned. This is extra hard for parents, who are already grappling with sadness and with multiple concerns about how their child will be treated. This is a time to get a lot of support and compassion for yourself. You will need a clear head to negotiate many details concerning your child’s care.
  • I felt relieved and incredibly grateful for the first few days of my daughter’s hospitalisation. My mother thought I would be a wreck, and I wasn’t. And I refused to feel guilty about not feeling guilty. My daughter was being rescued by competent and kind professional and this made us luckier than a whole lot of parents all over the world.
  • I was also relieved that my own personal hell was over. I still had to deal with rejection and hate every day or two when I visited, but that was fine. I acknowledged that the strain on us, as loving parents, had been horrendous, and I allowed myself to enjoy some much-needed peace of mind.
  • Some parents, like me, take advantage of the respite (in between numerous meetings and visits), while others fret. Some have to deal with multiple concerns about the hospital. Sometimes all is as well as can be but parents feel guilty because suddenly they hardly have anything to do. If this is you, treat yourself with as much kindness as you would treat a loved one. You’re part-way through what may be a long journey. Since professionals are caring for your child, use the time to recuperate and rebuild yourself. You may need to curl up in bed and sleep, or to enjoy the company of friends. Your child needs you to be very well, so that you can advocate for her while she’s in hospital and take charge when she’s discharged. Rest. Have fun. And if anyone asks you how you’re doing, tell them what they want to hear: that you’re sick with guilt and worry.
  • For me, the whole time that my daughter was in hospital was a time to educate myself about the illness and what could be done. I did a lot of reading, and I did a lot of advocating and requesting, in order to steer my daughter’s care in the direction I believed was best.
  • The days when my husband visited my daughter straight from work, when I would be on my own till nine at night, seemed scarily long. I got on with my work, which I do from home. Most days, though, there were meetings of some kind to go to. Both my work and my husband’s suffered, though not irrevocably. I turned down any work that required me to be bright-eyed and bushy-tailed. There are professional situation where tears are not OK.
  • The days when my husband visited my daughter straight from work, when I would be on my own till nine at night, seemed scarily long. I got on with my work, which I do from home. Most days, though, there were meetings of some kind to go to. Both my work and my husband’s suffered, though not irrevocably. I turned down any work that required me to be bright-eyed and bushy-tailed. There are professional situation where tears are not OK.
  • If you cry a lot, you’re in good company. I cried because I missed my daughter. I cried when I drove away from the ward and she’d not talked to me. I cried when someone treated me with kindness. I cried and fumed and pondered and planned when I disagreed with an aspect of her treatment. What I wish for you is that your child’s hospital comes with such an amazing reputation that you can relax and concentrate on looking forward to your child coming home. But I suspect that for many of us parents, at some stage along the journey there are huge stresses that come from dealing with one or more clinicians with whom we disagree.

As most of you won’t be contemplating having your child in hospital for nearly as long as we did, I’d like to quote a mother whose child, aged 13, was cared for at the Center for Treatment of Eating Disorders, Children's Hospital Minneapolis. It sounds like heaven.

“The program follows Maudsley meticulously. They do not believe in residential treatment for adolescents/teens UNLESS the patient is medically unstable, and then only for the briefest period possible.

During the entire three week period in the hospital, I was encouraged to be present as much as possible. We had family meals beginning after seven days, ramping up to twice per day as we neared the date for her discharge. We got LOTS of support from the team to help us understand both the theory and the practical means for implementation. I felt very little hesitation about going home, and they made me feel as if my husband and I were competent to handle the refeeding process at home.

[…]While hospitalized, there was minimal interaction with other inpatients, and always supervised. It was very well done. They had a TON of diversionary activities throughout each day, which made the stay more pleasant for my daughter (arts and crafts, music therapy, physical therapy, yoga, television shows produced in house, etc). She loved it.

The nurses were, without exception, kind and generous. Also, well trained in Maudsley, and deferential to parent decisions. I really felt like an important member of the team.”

Nine weeks after her daughter returned home for Family-Based Treatment, this mum wrote:

“Things are going VERY well with my daughter. The ED monster hasn't shown itself in any ugly way in several weeks now. We get little glimpses (requests for one kind of food over another), but nothing that has caused me so much as to raise an eyebrow.”

Read on my website: Can hospital equip you for family-based treatment? A parent’s inspirational account

Hospital emergency units

While I’m on the subject of hospitals, I’ll say a few words about emergency departments. They generally don’t get a good press in the eating-disorders world. Too often the staff don’t have specialised knowledge, and so the child and parents have to endure their judgemental reactions. Families may get sent home after several hours of waiting with: ‘She’s fine. Just make sure she gets a sandwich when you get home.’ Worse, some parents do not trust that the right tests were carried out.[69]

Some parents find emergency units very helpful, though, especially if there has been some advance joint work done through the eating disorders service.

A few days before my daughter was due to be admitted into hospital, I got really worried about her state of dehydration and I took her to an out-of-hours doctor. He told her that if she carried on, she’d end up in a medical ward, which would be a shame as she was looking forward to going into the mental health unit. So he made her promise to eat and drink as soon as she got home. I asked that she drink a glass of water right in front of him. I could see the thought bubble over his head: ‘Please no! What if she doesn’t drink?’ It took my kid quite some effort to manage that water, but having that doctor observe her made it possible.

Parents and clinicians in partnership

It’s a no-brainer that the best results come from clinicians and parents working in partnership, and yet I’ve seen ultra-competent parents become powerless victims when clinicians stand on a pedestal. We really need teamwork.

“Our treatment team didn't get everything right but they were really open to feedback.”

A consulting room should be a place where we parents consult people who have valuable expertise to offer.[70] The minute I am a pawn in someone else’s game, governed by rules I haven’t agreed to, my power to be effective diminishes.

There are instances of clinicians abusing the power that comes from their position. Some intimidate, blame, and refuse to discuss options. They can do so in subtle or overt ways. Either way, we get the message that we are not OK, and we find ourselves powerless to intervene in decisions around our child’s care. This can stress us out even more than the eating disorder itself. The minute we step into a consulting room we may be stripped of the qualities that makes us strong. It is remarkable that so many professionals call us Mum and Dad, as though our names were too hard to remember. I find it hilarious to see my husband being called Dad, but it drives him crazy. ‘Take a seat, Dad. How are you today?’ Grrr!

I wonder if we allow some clinicians to have power over us because we truly are in their hands. We come to them at a time of utter desperation. We pray they can save our child’s life and bring peace back to our family. So when the sessions don’t go as we wish, we keep quiet. We don’t want to upset or anger the therapist, because it matters more that our child is getting treatment.

Yet partnership between clinicians and parents means jointly working out the best way forward, often on a daily or weekly basis. That requires equality and great communication. I’ve even heard FBT therapists described as consultants to the parents. There are times when we are exhausted and devoid of imagination and we want experts to tell us exactly what to do. And there are times when we can take the lead because we know our kid better than anyone else and we’ve got the hang of this illness. Clinicians have a challenging job tracking where we’re at and what we need, and for that, we need to talk and assume that they can handle what we have to say.

“I told them they could/should give us more advice and feedback (a kind of coaching) without being afraid they were being too directive.”

Sometimes clinicians seem to lose momentum. A parent whose daughter had been ill for several years told me that the therapists seemed to just go through the motions. The parents, on the other hand, went on achieving milestones at home. When the clinicians saw progress, they seemed to become re-energised and they started offering more support.

The Nonviolent Communication framework outlined in Chapter 13 can help you sort out what’s going on in your head and give you the poise to request what you really want.

A small change – even just informing the clinician of what isn’t working for you – might make all the difference. The therapists may also be ready to change how they do things, and whatever they learn from you will inform how they work with their next patients. Openness and collaboration can do wonders.

Tell your clinicians about this book

If you’ve read this far, I am guessing you have found some tips you would like to try out. I would recommend you are open about this with your clinicians so you can work as a team. If there are disagreements, they’re better out in the open. Refrain from telling therapists how they ‘ought’ to be working. Would you like to be told how to do your job? Instead, tell them how the book is helping you or how it supports their treatment or how you’d like to try out some of the ideas. Ask, ‘What do you think? Could you have a quick look, and let us know?’[71]

Plan ahead to make sessions fruitful

When we visit therapists, we tend to let them take the lead. But sometimes the hour goes by quickly and issues that are important to us have not been addressed. We shouldn’t expect our clinicians to be mind readers, and so I believe it’s rational and not disrespectful to announce, before the meeting begins in earnest, the topics we really need help with. Work out your priorities with your partner and prepare a list ahead of time. Show that you two are a team, and expect your clinicians to work in partnership with you.

More family therapy without children, please

Standard FBT sessions happen with the whole family together in a room (‘conjoint’). But there is validated variant (‘separated’ or ‘parent-focused’) where parents talk with the therapist separately.[72]

We had a successful variation on this theme with the therapist who cared for us after our daughter was discharged from hospital. I had a weekly phone call with her to brief her about the week’s progress, tell her about our difficulties and make plans for the coming days. It kept the family meetings upbeat, and my daughter didn’t get to hear things that might have brought on shame or guilt. She was also spared discussions about upcoming challenges, as we had noted this raised her anxiety and increased her resistance.

Sessions exclusively between therapist and parents can be very helpful in making sure the therapist knows everything that matters about your child. Sometimes you can feel that your therapist is barking up the wrong tree, and perhaps that’s because there are things she needs to know which you haven’t yet told her. If your therapist is moving your kid too fast towards independent eating, for instance (Phase II of FBT), perhaps she needs to hear how he’s still hiding food or lying about eating his school lunches.

Whether a family does better with conjoint or family-focused family may depend on the parents’ ability to take charge, and how much the child is able to collaborate.[73] If you see your child engaging with the therapist, then the conjoint approach may be wonderfully supportive. If your child wriggles and squirms, lies, clams up or makes rude comments, try some parent-focused sessions.

Parents want advice

I really hate it when therapists give advice I don’t agree with.

Let me clarify. I don’t hate advice I disagree with; what I don’t like is when there’s no room for discussion. As the recipient of advice, you should feel entirely free to examine it, discuss its merits and weaknesses, assess risks with the help of your expert, and then make a decision. Not only because it’s your child, not only because you know her best, but also because if the advice doesn’t work out and it makes your job of feeding extra hard, it’s very much your problem.

What bugs me nearly as much as coercive, non-negotiable advice is the withholding of advice, the decision to be non-directive even when the parents beg for direction. Some clinicians stand by the principle that they don’t have all the answers whereas we, the parents, are experts on our child and have the power to work out solutions. What doesn’t work for me is when they hold back on their considerable expertise, built upon years of training and experience with families. If we were so knowledgeable about eating disorders, we wouldn’t be in an expert’s consulting room. We want ideas, suggestions, choices and advice, and if we’re heading down a dead-end road, we want to be told.

“We were in this big circle of parents and young people, and this woman started speaking of her daughter as ‘selfish’. We shifted uncomfortably in our seats. I glanced at the therapists, wondering why they weren’t saying something. Someone changed the subject. So I spoke up. The woman listened and it was like she’d seen the light. Her daughter teared up in relief. At break time, one of the therapists thanked me for intervening. It was surreal.”

If your child had a heart condition, the specialists would answer your questions, so why, with eating disorders, do parents have to do so much research and waste so much time with trial and error?

I guess I’m preaching to the choir. If you didn’t want suggestions and advice, you wouldn’t still be reading this book.

“I don't think every family has to start from scratch and re-invent the wheel. Sometimes I think Maudsley professionals get so wound up in not being directive that they end up not being supportive enough. We felt at times that they knew what we were doing wrong during meals but had to let us work it out rather than coach and give feedback. This left us feeling that we were experimenting on our child, and that we were being tested (how long would it take us to finally find a way of supporting meals which worked?).”

Giving advice is tricky. Empathy comes first. If parents don’t ask obvious questions like ‘How can I get my child to eat?’ then they’re probably too upset to cope with the answer. That may be a reason for a therapist to hold back.

Or perhaps the reason for evasiveness is a lot simpler:

“We’d ask the therapist for tips, and she’d say we were perfectly capable of feeding our daughter and that we’d find our own way. That made us feel even more incompetent, because we were failing big time. Then one day it occurred to me she probably didn’t have a clue herself. If so, I wish she’d told us straight.”

But I have also seen really knowledgeable therapists keep quiet. On one occasion, I sounded out our specialist about making a major U-turn on the content of meals. She exclaimed, ‘I’m so glad you asked!’ Clearly, she’d been itching for us to go down this new road, but for a reason I don’t understand, had waited for the impetus to come from us. Meanwhile we’d been meekly maintaining the status quo even though we hated it, because we thought it was what was expected of us.

Lock and Le Grange, the founders of FBT, teach that too much information may overwhelm rather than empower. That there is a balance to strike, as people learn by experience, from their mistakes. That being too directive can be disempowering and perhaps diminish learning.

So when we want answers, what can we parents do? I’d suggest we make our requests for advice crystal-clear. Until we do, the experts may have all sorts of reasons to hold back. So, ask, ask, and ask again.

Parents with eating disorders

Given that eating disorders have a major genetic component, it is to be expected that many parents have suffered from one themselves. Are you worried that you will be blamed or excluded from your kid’s treatment if you yourself have a history of the illness?

In principle, it shouldn’t be an obstacle. Family therapy has been shown to have a decent success rate, and the method doesn’t exclude parents with eating disorders.

Sometimes a parent’s eating disorder is still active and the child’s treatment is a strong trigger.[74] In this case, a therapist will encourage you to get treatment for yourself. I imagine that there is no problem as long as the parent is on the alert for anything they do or say that contradicts what they want for their child. Even without an eating disorder, we parents are part of society, and there are unhelpful messages and misinformation around healthy eating, fatty foods and body shape that we need to untangle ourselves from.

Supporting a child who is suffering can awaken emotions from vulnerable times in our own childhood. Mindfulness helps us to take care of our children as our true self, not as a hurt, scared or angry child. For some parents, this is a springboard to healing and growth for themselves.

Empowering parents

After the terrible old days of ‘parentectomies’, it’s a relief that enlightened therapists make parents part of the treatment team. Our need to feel competent and empowered is pretty fundamental. If this need isn’t met we turn into doormats or behave like a bull in a china shop. But being empowered also helps us make decisions on the fly. We can’t run to the therapist every time we hit a new variation on a problem. We may not ever feel totally competent, but we can at least aim for ‘good enough’.

In addition to how we feel about ourselves, it’s also absolutely essential for parents to be empowered in their child’s eyes. How else can we get our child to trust us more than they trust their disordered internal talk? Our first instinct may be to lean on the expert’s authority, but soon you can end up with triangulation: ‘The therapist said that I didn’t have to wear a hat and gloves if it’s not cold outside.’ Imagine having to wait a week for an appointment before you can resolve that one!

I noticed our eating disorders specialist very deliberately handing power over to us. There was one phone call where I told her of my desire to ditch the meal plan we’d inherited from the hospital. She validated that with enthusiasm. Next, I asked her how she would bring it up at our next appointment. I knew it would be a huge blow to my daughter and I expected the therapist to weigh in with her professional authority. No such luck. If I was entertaining the slightest hope that I could hide behind an expert and be shielded from my daughter’s reaction, I was sorely disappointed. ‘YOU will tell her,’ she said. ‘You and your husband are the people most competent to care for her.’

After a while my daughter started complaining as we drove to the appointments. She’d say, ‘She’s nice but I don’t need her. YOU know how to look after me.’

Success!

Your clinical team: is everyone on the same page?

If psychotherapists, counsellors or coaches are not well integrated in an eating disorders team, we should beware of our kids getting mixed messages. It would be so unhelpful if a therapist helping a child with her anxiety, for instance, talked about diets or body shape, or pushed her to make her own food choices without the parents’ agreement. The risk of this happening is quite high when big teams are involved.

At one stage, around 20 people seemed to have an interest in my daughter’s care – hospital staff, outpatient staff, eating disorder experts, and even representatives from her school. That was 20 people round the table at hospital review meetings every few months.

It’s an amazing feeling to see so many people rooting for your kid, scratching their heads about how best to help her, being delighted at her progress. And to have them all give us, the parents, a lot of consideration. One example of great teamwork was how my daughter’s education never fell behind. The link between clinicians and school was beautifully handled. But having a lot of experts, each giving you appointments, can mean that your child gets pulled out of class or deprived of fun several times a week. Yet it might be that only one or two people are directly useful to her.

Most of all, is everyone singing from the same hymn sheet? Sometimes you can get various parties pulling in opposite directions, and your child is piggy in the middle. We had a little bit of that, though we didn’t realise it at the time. For some families, the contradictions can be disastrous. Here’s an extreme illustration: say you are (in my opinion) lucky and you get family therapy with a trained eating disorders specialist, who wants you, the parent, to be in charge of your child’s meals. But say your underweight child also sees a dietitian who wants to negotiate meal plans with her, a doctor who says she can now stop gaining weight, a psychologist who believes that your adolescent needs independence, a something-or-another therapist who shames her for refusing dinner, and a psychiatrist who insists on one-to-one sessions to explore the reasons why, deep down, your child is using her eating disorder as a defence mechanism. See the problem?

The experts each believe in their own experience and competence. They may all believe they’re up to date with the research. You can be sure they are gritting their teeth and tearing their hair out about their differences, but they do so privately. They don’t discuss their colleagues with us parents. The best they can do is build bridges and hope to get others to come to their points of view, but what with hierarchies and politics and shows of respect for each other’s professions, you can imagine it’s not going to happen in a hurry.

It grieves me to see a child pulled in all directions and parents getting confusing messages while experts stay diplomatically silent. But what can be done? This is yet one more thing that falls on parents’ shoulders. Keep asking questions. Don’t be scared if you put some of the professionals’ noses out of joint. Find out about people’s training and what models they hold of the illness. Be your child’s best advocate. Make your choices.

One mother who read a draft of this book told me, ‘Cut that last bit out. You don’t have any choices.’ But she made important choices over and over, striving to make the best of a disjointed and ineffective treatment team.

“I arranged meetings with all professionals involved to get them on the same page. I threatened that otherwise I would write to the hospital board.”

Eventually she and her husband got rid of everyone except the family doctor and successfully took over their daughter’s care.

When you’re excluded from your child’s therapy

Earlier I wrote about the role of individual psychotherapy as an adjunct to family therapy. ‘Individual’ usually means that you’re firmly expected to sit in the waiting room. The therapist considers their client to be the child, not the child-parent unit. They want to give the child privacy from her parents. They will have a confidentiality agreement.

Think carefully of the pros and cons. When it works, parents are glad that their child has a private space to express themselves, heal or learn new ways of dealing with life’s challenges. Everyone is on the same page, and the therapist understands your role in supporting your child most hours of the day back home.

Often, though, our children bitterly resist sessions, and because the parents don’t have a good communication channel with the therapist, they have no idea if it’s worth persevering. Then there are the therapists who jeopardise the work you’re doing at home, because they think that family-based treatment is a shocking infringement of a young person’s independence. To them you are over-controlling or codependent. They might believe that your child must be take full responsibility for their recovery, which means that parents have to back off. For some, the crucial task of adolescence is to develop autonomy, and they set about this with little regard to the loving parent-child bond. Some make unilateral decisions based on what your child says, as though your child was miraculously free of the cognitive distortions and manipulations of an eating disorder.

A therapist may take it as read that your child will want a ‘private space’ away from you. Even family therapists make excuses to be alone with your child – presumably checking for abuse. It can be excruciating for our children. If you are present in therapy, not only can you make it easier for your child to express themselves, but you can help integrate any learnings into daily life. It’s a lot more effective than nagging your kid to fill in worksheets. The whole family can benefit from learning the tools of ACT (acceptance and commitment therapy) or DBT (dialectic behaviour therapy), for instance. Treatment for OCD requires a lot of practice in everyday situations.

If a therapist sees you as a taxi driver, I recommend you meet them alone to check out their expertise, qualifications, beliefs and methods. You are, after all, your child’s advocate. The therapist’s style and approach must make sense to you. Agree on two-way communication (I discuss confidentiality below). How will you update the therapist about your child’s symptoms and behaviours? How will want to warn them if your child’s mood plummets, or if he is facing new pressures with school, friends or a bereavement?

Conversely, what kind of thing is the therapist willing to tell you? Some will only reveal information if your child is actively suicidal. Others may agree to report if your child fails to attend a session or if their weight falls below a certain level. Some discuss with your child what they are willing to disclose in a joint session. This could be ten minutes at the end of each hour, or a longer monthly review.

Discuss the limits of the therapist’s decision-making. For instance, if you’re challenging your son’s fear of short sleeves, it’s counterproductive if the therapist tells him he should make his own clothing decisions. It’s not OK for your child to be coming home – and these are real examples – saying, ‘She told me I’m old enough to make my own food choices.’ Or, ‘She says I can join a gym.’ Or ‘She worked out my BMI and I don’t need to gain any more weight.’ Or ‘She thinks you’re over-protective and I should stop telling you things’.

If you haven’t set up the rules of teamwork, you could quickly become disempowered and unable to support your child in the longer term. Here is a real and all-too-typical example. I know of a 15-year old who was quickly and successfully brought back to a healthy weight through family therapy, with parents taking charge. The clinical team skipped the following phases of treatment and moved her on to individual therapy. There, the therapist decreed the girl was at an age to make her own food choices. The parents sat helplessly while their girl ate her own tiny, obsessively-prepared meals alone in her bedroom. They regularly emailed the therapist a list of symptoms and requested joint sessions, but only got bland responses – about things taking time and the girl needing to learn to take responsibility. When she became medically compromised and the parents still couldn’t take charge, it was a hospital that got her eating again.

I am frustrated about the wasted opportunities when parents are excluded. After my girl was discharged from hospital I moved heaven and earth for her to see an EMDR therapist. Her dieting had been triggered by a bullying incident, and she made a strong emotional connection between thinness with safety. I really hoped that now she was better, trauma therapy could help reset her beliefs.

Well, my daughter took great pride in taking the therapist for a ride. She would come home and laugh at the woman’s credulity. As my girl did want help, though, she and I proposed that I should join the sessions to act as my child’s intermediary, a translator of sorts. I knew what her issues where and what an EMDR therapist needed to know. Frustratingly, this psychologist thought that my presence would be weird, even though EMDR with very young kids is routinely done with the help of a parent. And so we lost our chance to give my kid resilience against similar incidents in the future. Had we succeeded, I wonder if my girl might not have dieted, some years later, when a comparable situation arose.

More on my website: Eating disorders: understand where psychotherapists are coming from

Confidentiality

For some parents the toughest issue around individual therapy is the professionals’ stance regarding confidentiality. Mental health laws are poorly designed for illnesses like eating disorders (that have a component of anosognosia) but a skilled clinician will work at finding solutions.[75] Sadly it’s also common for parents to be given a blunt: ‘Your son doesn’t want to speak to you. He doesn’t want you to know anything about his weight or his blood test results. Sorry and goodbye.’ Depending on where you live, this could start as early as age twelve.

When a twelve-year old has diabetes, are doctors as determined to withhold blood test results from parents?

A clinician may not be allowed to give you information until your child puts their consent in writing. If your son or daughter is reluctant, they may be more willing once they know they can specify an end date, and can withdraw consent any time.

A basic element of confidentiality in individual therapy is to guarantee a patient’s privacy, except if what she said indicates that she (or another person) is in some kind of danger or at risk. Before sharing this information with you, the therapist would normally discuss with your child who needs to know and how to tell them.

There’s an example of this in Glenn Waller’s manual for CBT therapists.[76] An underweight 15-year old disclosed in therapy that she was secretly vomiting at home. Given the level of risk, the therapist decided that others needed to know, and the two discussed how and when to tell the parents.

Indeed good therapists know that a child cannot get effective support at home if information is withheld about restricting or self-harming behaviours. They know that collaboration with parents is good for everyone. They have a sensible and compassionate approach to confidentiality. They work at securing your child’s agreement to involve you. Rather than making you ‘the other’, they nurture the power of your connection.

A very precious tool you have is that confidentiality rules only apply in one direction. You are allowed – and it would be wise – to tell your child’s therapist of any worrying behaviours you are observing. The clinician has a duty to listen, even if all they say back is ‘Thanks. Goodbye’. Here is some authoritative guidance on parents wishing to raise issues:

“The problem that many families report is lack of information […]this often arises from overenthusiastic defence of patient confidentiality. Even if the patient has said they do not want their family to be given information, the family can still be seen and counselled in general about any issue they wish to raise, as long as information coming from the patient is not divulged.”[77]

If you decide to reveal information to a therapist, it’s probably best if you have a compassionate conversation with your child about it. That way the information is flowing in all directions. If you don’t feel able to do this, the therapist should be able to advise on the next steps.

We had mostly good experiences around confidentiality. For example there was an occasion when our daughter revealed in a hospital family session that something was seriously troubling her, but she refused to give any details. We were delighted to find out that her favourite young nurse was on duty that night and that our daughter was ready to speak to her. The next morning, this delightful person phoned me and assured me that the whole issue had been dealt with and that my daughter was now quite at ease. To this day I don’t know what it was about, and I’m not worried about it.

It is a lot easier for us parents to let go of the need for information if we totally trust that the carers are doing an excellent job, at least as good as we would do ourselves. It’s even easier if treatment fully involves parents, so that there is no issue with confidentiality in the first place.

Children above legal-age thresholds

“Turning 18 can put pressure on a child. Services suddenly want to refer her to the adult services. Friends and classmates start to move away from home, giving her the feeling she should do the same.”

Many parents fear that as soon as their child turns 18, she will suddenly refuse to sit down at the dinner table. In practice, many youngsters continue to accept their parents’ care, even if they fight individual meals. Just as my 10-year-old could have run away every morning before breakfast, 18-year-olds don’t necessarily walk off just because they have the legal right to do so. And remember that the research on FBT was done on youngsters aged 12 to 18 inclusive. More recent research is looking at adaptations of the method for young adults.[78] I encourage parents to be assertive in their caring role whatever their child’s age, though I appreciate that it may not be easy.

Your country’s mental health laws will determine if your child can refuse treatment, if you have any decision-making power and, indeed, if you have a right to any information at all. Mental health laws do protect very ill people, making provisions to detain them and enforce treatment against their will. Some young people avoid treatment by keeping their weight very low but not so low as to get them sectioned. This is a dreadful situation, because it’s part of the nature of the illness that patients don’t consider themselves seriously sick, and even when they do, the fear of eating and putting on weight can be too much for them to willingly sign up for treatment.

Clinicians may be bound by law to act according to your child’s wishes, even when they know and you know that this will hinder his treatment. They may not be allowed to tube-feed or to keep a child in hospital or to give you, the parents, any information or powers. In some countries these issues kick in when your child is as young as 12. Frustratingly, it seems that some professionals are so attached to the legalities that they are practically begging the young person to refuse treatment: ‘OK Morgan, we would like to give you a supplement when you can’t finish a meal, but it’s your right to refuse. You’re over-16, you’ve not been sectioned, and you are free to walk away any time.’

Because of mental health laws, your youngster’s weight might plummet, she might discharge herself from treatment, and clinicians may not be allowed to tell you. Parents can be on tenterhooks, hoping that their child will voluntarily accept hospitalisation or that if she’s accepted treatment, she won’t suddenly change her mind.

Sometimes the issue is not so much with the law as the policies of treatment providers: a clinician’s focus may be on a young adult’s autonomy, while our own priority is for our child to be nourished and made safe. When clinicians believe that parents are part of the problem, not part of the solution, everybody suffers.

I have friends abroad whose 18-year-old daughter had willingly entrusted herself to her parents by giving them power of attorney. In spite of this the local eating disorder services would only treat her if she checked herself in of her own accord. This was just too hard for her. She needed her parents to carry the burden of decision-making at a particularly stressful time. So what happened? She eventually got better at home, without therapists, supported by her parents.

To find out what the laws are in your country, try these internet search keywords: ‘mental health law’, ‘detaining orders’, ‘section under the Mental Health Act’, ‘impaired decision-making ability’ and ‘compulsory treatment, citizen’s advice’. Depending on where you live, guardianship or power of attorney[79] may offer solutions.

You have a great big lever on your child: money (assuming your child depends on you financially). I know of parents who have used the money lever to secure their child’s agreement to treatment or to entice their young adult home for a spell of refeeding.

Threats always carry some risk. If you tell your child she can only live in your house if she accepts treatment, she may set up camp on the sofas of various friends. They are unlikely to help her to eat, shelter her from drink, drugs or self-harm. (As for sex, be aware that young anorexic women do become pregnant – having no period is not a reliable contraceptive.[80]) The picture doesn’t have to be so bleak though: your young adult may storm out of your house but accept the care of an aunt, of your ex, of a heroic boyfriend or girlfriend. She may also return home because that’s ultimately where she feels secure.

You have one huge asset: your relationship. Your child may fight you much of the time, but she is mostly fighting internal conflicts. While she is in distress you can bet she is longing to lean on you and receive your care, love and guidance.

Therapy, coaching and emotional support for parents

It is ironic that while children are subjected to ineffective psychotherapy, the people who badly need psychological support – the parents – only get to perform the taxi service. My hunt for emotional support began when I realised that not only was I bursting into tears on a regular basis in the most inappropriate of places (leading to a pathological attachment to my sunglasses), but for the first time in my life I’d caught myself toying with fantasies of self-harm. In those days I could withstand my child’s resistance without showing my reactions, but it came at a cost. I was a pressure cooker of emotions.

At the same time I did feel powerful. I was not a depressed wreck. I was on a hero’s journey,[81] with an all-important destination. I was limping and my blisters were giving me hell, but I wasn’t a cripple. All I wanted was some trusted companions to bandage me up and apply healing ointments so I could continue on my mission. In short, I was like all the parents I’ve ever come across who are helping a child beat an eating disorder. There are parental acts of heroism going on all over the planet, day in, day out.

In an ideal world, all parents supporting a child with an eating disorder would be offered individual support (described as counselling, coaching, or psychotherapy), as well as group support. I believe this is reasonably standard if your child or your spouse is being treated for cancer. Most of us, however, have to hunt for support and pay for it.

I myself now offer individual support to parents[82] and could describe myself as a counsellor when people’s needs are mainly emotional, and as a coach when people want tools to get their child to eat, to communicate better, or to manage their emotions.

If you’re not familiar with therapists, counsellors or coaches, what follows may help you find what you need.

Therapists who will help you flourish

Psychotherapy (often shortened to ‘therapy’) refers to any kind of psychological care. Some psychotherapists (often shortened to ‘therapists’) are qualified clinical psychologists, some are kind people who’ve done a counselling or coaching course, and some are really, really loving people who have received special healing powers by a person with a direct line to God. Qualifications are no guarantee that sessions will be any different from sitting by the fire and throwing a ten-pound note in every few minutes. It’s nearly impossible to know if a particular therapist will be any use until you’ve given them a trial run, though their websites can help you make an initial assessment.

The most common types of psychotherapies are individual (one-to-one) talking therapies, and within this category, there are gazillions of schools, models and methods. Some focus on behaviour change, some work on the past, some concentrate on the present or future. Some are based on talk, others on the body and emotions. Some are evidence-based, and some are not. What emerges from research is that the method doesn’t matter as much as your connection with the person on the other side of the Kleenex box.

My own hunt for support

The day my daughter’s clinicians realised how bad I felt, they got me a prompt referral to a senior psychologist. This person did psychodynamic therapy – that’s therapy rooted in psychoanalysis. She couldn’t relate to my request to help me build on my strengths in order to be there for my daughter, meal after meal, day after day. I guess she didn’t have the tools to do it. Her approach was to have me talk about my childhood and look for insights around the harm my parents might have caused me. Warmth and kindness were not on the menu – professional detachment is seen as a virtue in many schools of psychotherapy. Nor did I have any hope she would ever see me as a fellow human being worthy of dignity and compassion. I saw myself suddenly as a bundle of potential hang-ups, contradictions and weaknesses, a helpless victim of a childhood that couldn’t possibly be good enough.

Don’t get stuck with a therapist like that. Indeed many therapists work on the presumption that we are deficient. Their outlook is one of illness, of alleviating misery, not flourishing or fulfilment. They see your ongoing difficulties as your failure, not theirs. Would you keep taking your car to a garage, week after week, if your car continued to gurgle and splutter?

Find someone who aims to make you well. Better than well – someone who can help you blossom, flourish and enjoy life to the full. The field of positive psychology has opened up all these possibilities.

After one session with my psychodynamic therapist, the only way for me to get prompt support was to go private. It really hurt to find out what the going rates were. But my husband and I put it in the category of ‘things that come along with the illness and become a priority’.

As it turned out, an excellent psychotherapist can go a very long way. I stopped crying after one session with a new, kind therapist.[83] After four sessions I’d moved on and said a fond good-bye. I was well and felt I’d got what she had to give me, and for that I’m most grateful.

What was the magic? Good listening and reflecting skills, of course. She also taught me much of what I’m telling you in this book about anger and knee-jerk reactions. She noted my strengths and reflected back to me a picture of an OK person who could make things happen. For the first time I had someone’s full, compassionate attention and that in itself was like a balm.

Meanwhile my knowledge of Nonviolent Communication was starting to come together and I was gathering lots of tools to help me be well. I discovered that whenever I was stuck, a session with a Nonviolent Communication trainer would help me move on.

With my daughter’s relapse I found I wanted support again. This time I chose a therapist highly qualified in emotional freedom technique (EFT)[84] and I stuck with her for her human qualities – and because I could see immediate results. Not only did I get a boost when I needed it, I also could see my general resilience and wellbeing shooting up.

How to choose the right person for you

If you long for support, I hope you will find an excellent therapist.[85] If you’re not rich, you may discover that after a couple of sessions you are strong again, and you may only need an occasional top-up every now and again. Be aware, also, that many psychotherapists adjust their rates to suit your financial situation.

One session might be enough to test a therapist out, and even before that, their website might give you some clues. Notice what’s going on for you during the first session. Do you get a sense of being heard and supported? Of being held as an equal, with respect for your shared humanity? Do you feel calm and do you get a sense of assurance and relief seeping back into your body? Are you more ready to give the best of yourself at home and do you feel generally energised? If so, you’ve struck gold. Never mind the method – you’ve got yourself the therapist you need.

PhDs and top qualifications don’t guarantee you will get a great therapist, though if you are suffering from trauma, depression or anxiety it would be wise to aim for someone with solid experience, training and supervision.  For the rest, check out various therapists’ experience and personal qualities, and see if what they offer matches your needs.

A word of caution, as your therapist may not be knowledgeable about eating disorders. They may not appreciate that your kid’s behaviours are not within his control. They may be shocked by the relentless intensity of what is going on in your home. You need help with unconditional acceptance for your child, not more judgement, so be ready to educate your psychotherapist.

More here on psychotherapy approaches that might be on offer to your child or yourself. Some are well worth pursuing, others possibly not:

  • Positive psychology
  • Nonviolent Communication (NVC) as a psychotherapy
  • Acceptance and commitment therapy (ACT)
  • Cognitive behaviour therapy (CBT)
  • Dialectical behaviour therapy (DBT)
  • Emotion-focused family therapy (EFFT)
  • Psychodynamic therapies
  • Eye-movement desensitisation and reprocessing (EMDR)
  • Emotional freedom technique (EFT, or ‘tapping’)
  • Cognitive remediation therapy (CRT)
  • Repetitive transcranial magnetic stimulation (rTMS)

Also on this site: Three routes out of post-traumatic stress disorder (PTSD)

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Endnotes

[1] We have data from randomised controlled trials of FBT, but when you’re choosing a therapist or centre, it’s nearly impossible to have data on the percentage of patients they successfully treated. For a rare and informative exception, see Dr Sarah Ravin’s series of blogs where she publishes and discusses her results: http://www.blog.drsarahravin.com/depression/a-preview-of-my-treatment-outcome-research/

[2] Search for organisations that provide information and support on patients’ rights. In the UK, consult Citizens Advice Bureau. See also my ‘England’ and my ‘Scotland’ pages on my website.

[3] European countries have a marked psychoanalytical legacy. I interview parents from Switzerland on https://youtu.be/ehZ_SelFGwI Forbidding parental visits until a certain weight is reached is common in French hospitals.

[4] Thomas Insel, MD, Director of the National Institute of Mental Health, (on the ‘Facts’ section of the F.E.A.S.T. site) November 2010.

[5] See for instance, Beverley Mattocks’ account in Please Eat (http://amzn.to/195YWhF). The ‘rock bottom’ principle has been popularised by accounts from recovered addicts, but we should not generalise to eating disorders

[6] As explained in Chapter 4. Also, The National Institute of Mental Health in the US funded a review of many forms of treatment. It concluded that ‘the evidence base is strongest for the Maudsley model of family therapy for anorexia nervosa’. Keel, P. K. and Haedt, A., ‘Evidence-based psychosocial treatments for eating problems and eating disorders’ in J. Clin. Child Adolesc. Psychol. (January 2008), vol. 37, no. 1, pp. 39–61, http://www.ncbi.nlm.nih.gov/pubmed/18444053

As a result, The National Institute of Mental Health recommends FBT for the treatment of young people with anorexia: http://www.nimh.nih.gov/health/publications/eating-disorders/index.shtml

Also: Lock, J., ‘Evaluation of family treatment models for eating disorders’, Curr. Opin. Psychiatry, (2011), vol. 24, no. 4, pp. 274–9, http://www.medscape.com/viewarticle/744675

[7] Glenn Waller (2016), ‘Treatment Protocols for Eating Disorders: Clinicians’ Attitudes, Concerns, Adherence and Difficulties Delivering Evidence-Based Psychological Interventions’ F1000 Research http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4759212/

For a personal account, see ‘Clinician Faces Old Ideas As She Pursues New Career’ (http://www.feast-ed.org/news/news.asp?id=255447), where Dr Sarah Ravin, whose blog is consistently eye-opening and wise, explains why so many clinicians ignore evidence-based treatment.

‘Show Me the Science’ is another excellent article from Dr Sarah Ravin’s blog: she explains how, in the world of psychology, it is quite common to find resistance to evidence-based practices. And also, how working to a manual still allows a therapist plenty of room to customise treatment to each unique patient: http://www.blog.drsarahravin.com/depression/show-me-the-science

[8] This is ‘unconscious incompetence’, one of four stages of competence wikipedia.org/wiki/Four_stages_of_competence

[9] South London and Maudlsey NHS Trust, Specialist Child and Adolescent Eating Disorder Service (CAEDS). https://www.national.slam.nhs.uk/services/camhs/camhs-eatingdisorders/

In North London, Great Ormond Street Hospital for Children has a Feedingand Eating Disorders Service which UK paediatricians or CAMHS can refer your child to. http://tinyurl.com/qhv63c9

In Scotland, CAMHS can refer under-12s to the inpatient psychiatric unit (which has eating disorders expertise) at the Royal Hospital for Sick Children in Glasgow.

[10] http://www.national.slam.nhs.uk/services/camhs/camhs-eatingdisorders/resources/
Ivan Eisler tells me that with these different modalities (outpatient, day care and close links with the inpatient unit), 80% of patients were discharged without any need for further eating disorders treatment (most are simply discharged, while around 14% go on to CAMHS treatment for other problems like anxiety or depression). Could one consider these patients to have achieved full remission, as in published studies? ‘We would be cautious in saying that they are all recovered as there is often a time lag between weight/eating recovery and cognitive recovery. There are certainly a proportion of people we discharge who remain troubled for some time by eating disorder thoughts, but the great majority continue to improve in this area post treatment and very few relapse (around 5-10%).’  How long before patients are discharged? ‘Around 25% need 6 months or less, another 25% need 18 months, and a very small proportion need 2 years or more of outpatient treatment.’

[11] Ivan Eisler, Mima Simic, Esther Blessit, Liz Dodge and team (2016), Maudsley service manual for child and adolescent eating disorders http://www.national.slam.nhs.uk/services/camhs/camhs-eatingdisorders/resources

[12] From Eisler, I., ‘The empirical and theoretical base of family therapy and multiple family day therapy for adolescent anorexia nervosa.’ In Journal of Family Therapy (2005) 27: 104-131 Includes a highly-readable description of the therapy http://tinyurl.com/nqggotg Also a study soon to be published shows better outcomes when families receive multifamily therapy as well as single family therapy: Eisler, I., Simic, M., Hodsoll, J., Asen, E., Berelowitz, M., Connan, F. et al. (in press, 2016). ‘A pragmatic randomised multi-centre trial of multifamily and single family therapy for adolescent anorexia nervosa.’ BMC Psychiatry.

[13] Minimum 4-day training given to experienced therapists in many UK eating-disorders teams (https://www.national.slam.nhs.uk/services/camhs/camhs-eatingdisorderstraining) (though Scotland is mostly FBT-trained). From what parents tell me or write on forums, some find multi-family incredibly helpful, while others say it wasn’t for them. In the US, UCSD ’s intensive multi-family therapy program (http://eatingdisorders.ucsd.edu/treatment/oneweek-intensive-treatment-programs.html) was developed with Ivan Eisler’s input. It differs from the UK approach and generally gets a big thumbs up from parents.

[14] Lock, J., Le Grange, D., Agras, W. S. and Dare, C., Treatment Manual for Anorexia Nervosa: A Family-Based Approach https://amzn.to/2UyqXfK. This book is written for clinicians but it’s totally accessible to parents and full of useful information.

[15] Lock, J. and Le Grange, D., Help your teenager beat an eating disorder (https://amzn.to/2IzYiVQ). This book is essential reading for parents. If you read nothing else, read this.

[16]Family Therapy for Adolescent Eating and Weight Disorders: New Applications’, edited by Katharine L. Loeb, Daniel Le Grange, James Lock, 2015. http://amzn.to/1avbchl

[17] For more on the difference between FBT (often called ‘Maudsley’) and the ‘New Maudsley Method, read ‘Navigating the Search for True Maudsley Treatment’ on the MaudsleyParents website. http://maudsleyparents.org/uofchicagoadvice.html

[i] Fisher, C. A., Hetrick, S. E. and Rushford, N., ‘Family therapy for anorexia nervosa’ in Cochrane Database Syst Rev (April 2010), vol. 14, no. 4, CD004780, http://www.ncbi.nlm.nih.gov/pubmed/20393940 reviewed trials where interventions described as ‘family therapy’ were compared to other psychological or educational interventions. On the whole, there seemed to be little advantage in family therapy. In other words, don’t assume that just because Family-Based Treatment works, any other form of family therapy will work too.

[18] Treasure, J., Smith, G. and Crane, A., Skills-based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method. Note that this is method is different from the so-called ‘Maudsley Approach’, or Family-Based Treatment (FBT) manualised by Lock, Le Grange et al.

Another book by the New Maudsley team is Anorexia Nervosa. A Recovery Guide for Sufferers, Families and Friends by Treasure, J. and Alexander, J. (Routledge Mental Health).

The website of the The New Maudsley Approach (http://thenewmaudsleyapproach.co.uk) has a practical tools for parents to help them support their (mostly adult) loved one.

[19] Fisher, C. A., Hetrick, S. E. and Rushford, N., ‘Family therapy for anorexia nervosa’ in Cochrane Database Syst Rev (April 2010), vol. 14, no. 4, CD004780, http://www.ncbi.nlm.nih.gov/pubmed/20393940 reviewed trials where interventions described as ‘family therapy’ were compared to other psychological or educational interventions. On the whole, there seemed to be little advantage in family therapy. In other words, don’t assume that just because Family-Based Treatment works, any other form of family therapy will work too.

[20] Agras, S. W., Lock, J., Brandt, H., Bryson, S. W., Dodge, E., Halmi, K.A., Jo, B., Johnson, C., Kaye, W., Wilfley, D., Woodside, B., ‘Comparison of 2 Family Therapies for Adolescent Anorexia Nervosa. A Randomized Parallel Trial.’ In JAMA Psychiatry (2014) http://tinyurl.com/hxvltpx There were 78 adolescents receiving FBT and 80 receiving systemic family therapy. Both treatments led to similar rates of recovery at end of treatment and at 12-month follow-up. But there were differences in other outcomes: systemic family therapy was better for adolescents who had obsessive-compulsive symptoms as well as anorexia, and FBT was better at reducing hospitalisation (median number of days 8.3 days versus 21.0 days), possibly because patients put on weight faster in the initial 8 weeks of treatment. Both types of treatment lasted 9 months.

[21] Prior to the research conducted on FBT, ‘the evidence’ for anorexia treatment was ‘weak’, the literature ‘sparse and inconclusive’, according to Bulik, C. M., Berkman, N., Kimberly, A. et al, ‘Anorexia nervosa: a systematic review of randomized clinical trials’ in Int. J. Eat. Disord. (2007), vol. 40, pp. 310–20, http://onlinelibrary.wiley.com/doi/10.1002/eat.20367/abstract

Some figures for patients not treated with FBT are available from Strober, M., Freeman, R. and Morrell, W., ‘The long-term course of severe anorexia nervosa in adolescents: survival analysis of recovery, relapse, and outcome predictors over 10-15 years in a prospective study’ in Int. J. Eat. Disord. (December 1997), vol. 22, no. 4, pp. 339–60, http://www.ncbi.nlm.nih.gov/pubmed/9356884

Here’s an overview from this paper: Other review studies reported that 32 per cent to 68 per cent of people who’d had anorexia as youngsters had, some years later, a ‘good outcome’. Mortality, including suicide, was 1.8 per cent to 14.1 per cent. Strober’s study followed adolescents treated in one intensive inpatient unit, which provided weight-restoration, individual and family therapy. Ten to 15 years later, none of the 95 patients died. There was a ‘good outcome’ in 86 per cent of patients, and 76 per cent of patients made a ‘full recovery’. But it took a long time to get them there: 57 to 79 months, depending on the definition of recovery.

[22] Lock, J., Le Grange, D., Agras, W. S. and Dare, C., Treatment Manual for Anorexia Nervosa: A Family-Based Approach https://amzn.to/2UyqXfK

[23] The main studies:
Eisler, I., Dare, C., Russell, G. F. M., Szmukler, G. I., Le Grange, D. and Dodge, E., ‘Family and individual therapy in anorexia nervosa: A five-year follow-up’ in Archives of General Psychiatry (1997) vol. 54, pp. 1025–30, http://www.ncbi.nlm.nih.gov/pubmed/9366659

Lock, J., Le Grange, D., Agras, W.S., Moye, A., Bryson, S.W., and Jo, B., ‘Randomized Clinical Trial Comparing Family-Based Treatment to Adolescent Focused Individual Therapy for Adolescents with Anorexia’ in Arch. Gen. Psychiatry (2010), 67(10), pp. 1025-1032, http://tinyurl.com/a322bg7. Full remission, in this study, means a combination of a minimum of 95% of ideal body weight (given the patient’s gender, age, and height) and scores within 1 standard deviation from global mean Eating Disorder Examination (EDE) norms (which means their behaviours and thoughts were within a normal range).

Were these studies done with ‘easy’ patients? It seems not: 26 per cent of the participants had co-morbid psychiatric disorders, and 45 per cent had previously been hospitalised.

Agras, S. W., Lock, J., Brandt, H., Bryson, S. W., Dodge, E., Halmi, K.A., Jo, B., Johnson, C., Kaye, W., Wilfley, D., Woodside, B., ‘Comparison of 2 Family Therapies for Adolescent Anorexia Nervosa. A Randomized Parallel Trial.’ In JAMA Psychiatry (September 24, 2014) http://archpsyc.jamanetwork.com/article.aspx?articleID=1910336 is another randomised controlled trial, this time comparing FBT with another form of family therapy (systemic family therapy). Success rates were lower than in the 2010 study. One possible reason I have been given in a personal communication is that the therapists had far less experience in FBT than those in the 2010 study – indeed when 210 therapy tapes were audited for ‘fidelity’ to the approach, the mean scores were only 4.38 on a 0 to 6 scale. Note also that the therapy, in this case, only lasted 6 months. To expect weight, mindset and behaviours to have all returned to normal within 6 months (‘’full remission’) is very ambitious.

We also have figures for FBT used after a hospital stay: Madden S, Miskovic-Wheatley J, Wallis A, Kohn M, Lock J,  Le Grange D, Jo B, Clarke S, Rhodes P, Hay P,  Touyz S. ‘A randomized controlled trial of in-patient treatment for anorexia nervosa in medically unstable adolescents. In Psychol Med. (2015) 45:415-427 http://tinyurl.com/j35xvzf

More statistics come from Daniel Le Grange, Elizabeth K. Hughes, Andrew Court, Michele Yeo, Ross D. Crosby, Susan M. Sawyer. ‘Randomized Clinical Trial of Parent-Focused Treatment and Family-Based Treatment for Adolescent Anorexia Nervosa’. J Am Academy Child & Ado Psych (2016) 55 (8) pp 683–692 http://tinyurl.com/z7rwsgr

On the whole, the effect of the treatment seems to stick, and time or life also seems to bring improvements: five years after the end of FBT treatment, 80 to 85 per cent of youngsters no longer met diagnostic criteria.

Were these studies done with ‘easy’ patients? It seems not, in the largest study (the 2010 one), 26 per cent of the participants had co-morbid psychiatric disorders, and 45 per cent had previously been hospitalised.

Another randomised controlled trial was published in 2014, this time comparing FBT with another form of family therapy (systemic family therapy). Success rates were lower than in the 2010 study. One possible reason I have been given in a personal communication is that the therapists had far less experience in FBT than those in the 2010 study – indeed when 210 therapy tapes were audited for ‘fidelity’ to the approach, the mean scores were only 4.38 on a 0 to 6 scale. Note also that the therapy, in this case, only lasted 6 months. To expect weight, mindset and behaviours to have all returned to normal within 6 months (‘’full remission’) is very ambitious. For the 78 adolescents receiving FBT, the rates were 33.1 per cent at end of treatment and 40.7 per cent at the 12-month follow up (compared to 42 per cent and 49 per cent respectively in the 2010 study). Agras, S. W., Lock, J., Brandt, H., Bryson, S. W., Dodge, E., Halmi, K.A., Jo, B., Johnson, C., Kaye, W., Wilfley, D., Woodside, B., ‘Comparison of 2 Family Therapies for Adolescent Anorexia Nervosa. A Randomized Parallel Trial.’ In JAMA Psychiatry (September 24, 2014) http://archpsyc.jamanetwork.com/article.aspx?articleID=1910336

We also have figures for FBT used after a hospital stay: Madden S, Miskovic-Wheatley J, Wallis A, Kohn M, Lock J,  Le Grange D, Jo B, Clarke S, Rhodes P, Hay P,  Touyz S. ‘A randomized controlled trial of in-patient treatment for anorexia nervosa in medically unstable adolescents. In Psychol Med. (2015) 45:415-427 http://tinyurl.com/j35xvzf

More statistics come from Daniel Le Grange, Elizabeth K. Hughes, Andrew Court, Michele Yeo, Ross D. Crosby, Susan M. Sawyer. ‘Randomized Clinical Trial of Parent-Focused Treatment and Family-Based Treatment for Adolescent Anorexia Nervosa’. J Am Academy Child & Ado Psych (2016) 55 (8) pp 683–692 http://tinyurl.com/z7rwsgr

On the whole, FBT seems to work with half the dose: from 20 to 24 sessions over a year are no better than 10 sessions over 6 months (but patients with significant Obsessive-Compulsive Disorder symptoms fare better with the longer dose): Lock, J., Agras, W. S., Bryson, S. and Kraemer, H., ‘A comparison of short- and long-term family therapy for adolescent anorexia nervosa’ in J. Am. Acad. Child Adolesc. Psychiatry (2005), vol. 44, pp. 632–9, http://www.ncbi.nlm.nih.gov/pubmed/15968231

[24] Statistics summarised in Daniel Le Grange et al. ‘Randomized Clinical Trial of Parent-Focused Treatment and Family-Based Treatment for Adolescent Anorexia Nervosa’. J Am Academy Child & Ado Psych (2016) 55 (8) pp 683–692 http://tinyurl.com/z7rwsgr Daniel Le Grange told me they represent averages from up to and including 2015, all using a high bar for ‘remission’. Note that the studies’ weight criterion for ‘remission’ is over 95% of median body mass index. I explained earlier the problem with using population statistics to estimate a healthy weight target.

[25] These are youngsters whose weight reached at least 85 per cent of median body mass index

[26] FBT and under-12s: Lock J., Le Grange, D., Forsberg, S. and Hewell, K., ‘Is family therapy useful for treating children with anorexia nervosa? Results of a case series’ in J. Am. Acad. Child Adolesc. Psychiatry (November 2006), vol. 45, no. 11, pp. 1323-8, http://www.ncbi.nlm.nih.gov/pubmed/17075354

Many FBT studies focus on 12 to 18-year olds, but results are similar with 9 to 13-year-olds, according to a study of 32 children with anorexia: Lock J., Le Grange, D., Forsberg, S. and Hewell, K., ‘Is family therapy useful for treating children with anorexia nervosa? Results of a case series’ in J. Am. Acad. Child Adolesc. Psychiatry (November 2006), vol. 45, no. 11, pp. 1323-8, http://www.ncbi.nlm.nih.gov/pubmed/17075354

[27] ‘Young adults with anorexia: not too old for family therapy’  by Eva Musby (2015) http://www.mirror-mirror.org/treatment-for-young-adults-with-anorexia.htm See also an earlier account: http://www.maudsleyparents.org/youngadults.html

[28] 'Randomized clinical trial of family-based treatment and cognitive-behavioral therapy for adolescent bulimia nervosa.' Daniel Le Grange, James Lock, W. Stewart Agras, Susan W. Bryson, Booil Jo. J Am Academy of Child & Adol Psych, 2015, 54(11) p886-894 http://www.jaacap.com/article/S0890-8567(15)00538-9/abstract
For a summary of this research, read Dr L Muhlheim (2015): 'For teens with bulimia, family based treatment is recommended' www.eatingdisordertherapyla.com/for-teens-with-bulimia-family-based-treatment-is-recommended

[29] Ivan Eisler, Mima Simic, Esther Blessit, Liz Dodge and team (2016), Maudsley service manual for child and adolescent eating disorders http://www.national.slam.nhs.uk/services/camhs/camhs-eatingdisorders/resources
Lock, J., Le Grange, D., Agras, W. S. and Dare, C., Treatment Manual for Anorexia Nervosa: A Family-Based Approach https://amzn.to/2UyqXfK
Lots more on FBT on The Maudsley Parents website http://maudsleyparents.org

[30] On the whole, FBT seems to work with half the dose: from 20 to 24 sessions over a year are no better than 10 sessions over 6 months (but patients with significant Obsessive-Compulsive Disorder symptoms fare better with the longer dose): Lock, J., Agras, W. S., Bryson, S. and Kraemer, H., ‘A comparison of short- and long-term family therapy for adolescent anorexia nervosa’ in J. Am. Acad. Child Adolesc. Psychiatry (2005), vol. 44, pp. 632–9, http://www.ncbi.nlm.nih.gov/pubmed/15968231

[31] For a wonderful description of Phase II in FBT, I refer you once again to Dr Sarah Ravin’s ever-informative blog: Navigating Phase II, http://www.blog.drsarahravin.com/eating-disorders/navigating-phase-ii/

[32] Dr Sarah Ravin writes about the main issues addressed in Phase III in http://www.blog.drsarahravin.com/eating-disorders/navigating-phase-iii/

[33] Train2treat4ed lists certified FBT therapists: train2treat4ed.com/certified-therapists-list. They may not all be there because they have to pay to be on the site. I list those who are available to treat via Skype on anorexiafamily.com/certified-fbt-therapists-family-based-treatment-who-skype. The site Maudsley Parents lists FBT therapists along with some information about them: maudsleyparents.org/providerlist.html

[34] This is now the case for all CAMHS in Scotland and many in England.

[35] Even after a year of training and weekly supervision, when 210 FBT therapy tapes were audited, therapists did not show more than a moderate level of fidelity to the FBT approach. Lock, L., Le Grange, D., Agras, W.S., Moye, A., Bryson, S.W., and Jo, B., ‘Randomized Clinical Trial Comparing Family-Based Treatment to Adolescent Focused Individual Therapy for Adolescents with Anorexia’ in Arch. Gen. Psychiatry (October 2010), 67(10), pp. 1025-1032, http://tinyurl.com/a322bg7 The team are working on improving dissemination.

[36] From a parent on the FEAST forum: aroundthedinnertable.org/post/show_single_post?pid=1294874899

[37] For instance, Ellison, R., Rhodes, P., Madden, S., Miskovic, J., Wallis, A., Baillie, A., Kohn, M. and Touyz, S., ‘Do the components of manualized family-based treatment for anorexia nervosa predict weight gain?’ in Int. J. Eat. Disord. (May 2012), vol. 45, no. 4, pp. 609–14, http://www.ncbi.nlm.nih.gov/pubmed/22270977. This showed that parents taking control, being united, not criticizing the patient and externalizing the illness predicted greater weight gain. Sibling support did not predict weight gain.

[38] For adaptions of FBT, read Family therapy for adolescent eating and weight disorders edited by Katharine Loeb, Daniel Le Grange and James Lock, Routledge, 2015 http://amzn.to/1NN56aF

[39] Therapists offering CBT-E may go through certification with Christopher Fairburn (http://credo-oxford.com) but if they already know general CBT and are experienced in dealing with eating disorders, they may also learn the approach from his manual. Glenn Waller delivers training on demand.

[40] Glenn Waller (2016), ‘Recent advances in psychological therapies for eating disorders’ F1000 Research http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4841195/

[41] This statistic comes from Christopher G. Fairburn’s book Cognitive Behavior Therapy and Eating Disorders https://amzn.to/2EkkMFU

See also Hollon, S. D. and Wilson, G. T., ‘Psychoanalysis or Cognitive-Behavioral Therapy for Bulimia Nervosa: the Specificity of Psychological Treatments’ in Am J Psychiatry (2014), vol. 171, pp. 13–16, http://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.2013.13101302

[42] NICE guidance (2017): nice.org.uk/guidance/ng69 I explain it in anorexiafamily.com/nice-guidelines-adolescent-eating-disorder-ng69

[43] Dalle Grave, R., Calugi, S., Doll, H. A. and Fairburn, C. G., ‘Enhanced cognitive behaviour therapy for adolescents with anorexia nervosa: an alternative to family therapy?’ in Behav. Res. Ther. (January 2013), vol. 51, no. 1, R9–R12, http://www.ncbi.nlm.nih.gov/pubmed/23123081. Two-thirds of 49 adolescents completed the full 40-session treatment. Their weight showed ‘a substantial increase’, but note that only one-third reached ‘95 per cent of the expected weight for their age and sex’. The outcome was considered positive for two-thirds of participants. Their ‘eating disorder psychopathology’ showed a ‘substantial decrease’. At follow-up 60 weeks later ‘there was little change’.

[44] 'Randomized clinical trial of family-based treatment and cognitive-behavioral therapy for adolescent bulimia nervosa.' Daniel Le Grange, James Lock, W. Stewart Agras, Susan W. Bryson, Booil Jo. J Am Academy of Child & Adol Psych, 2015, 54(11) p886-894 http://www.jaacap.com/article/S0890-8567(15)00538-9/abstract
For a summary of this research, read Dr L Muhlheim (2015): 'For teens with bulimia, family based treatment is recommended' www.eatingdisordertherapyla.com/for-teens-with-bulimia-family-based-treatment-is-recommended

[45] Glenn Waller (2016), ‘Recent advances in psychological therapies for eating disorders’ F1000 Research http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4841195/

[46] The CBT-E manual for therapists, which lays out the approach’s protocol, is easy for parents to read and has a chapter on patients in their late teens: Fairburn, C. G., Cognitive Behavior Therapy and Eating Disorders https://amzn.to/2EkkMFU. Patients are normally asked to read Christopher Fairburn’s book Overcoming Binge Eating (https://amzn.to/2Nf6mKh)
I found it very useful to contrast the CBT-E manual with this highly readable book for therapists, which presents detailed guidance rather than a strict protocol: Waller, G., Cordery, H., Costorphine, E., Hinrichsen, H., Lawson, R., Mountford, V., Russel, K. (2007) Cognitive Behavioral Therapy for Eating Disorders: Comprehensive Treatment Guide (https://amzn.to/2TXHQzD), which also has a chapter on children and adolescents. From the same authors, see also Beating Your Eating Disorder: A Cognitive-Behavioral Self-Help Guide for Adult Sufferers and their Carers (https://amzn.to/2GPXYj8). This is designed to help identify whether one or a loved one has a problem; to suggest what to do to help oneself or a loved one; and to point out how to go forward into formal help if that self-help is not working (including what to look for in a good CBT therapist).
Glenn Waller tells me that other evidence-based adaptations of CBT, apart from Fairburn’s, are Bulik’s and Ghaderi’s.
I’m grateful for my discussion with CBT-E therapist Alison Jane Geddes, registered mental nurse and psychological therapist at Mind My Health www.mindmyhealth.co.uk

[47] Glenn Waller and colleagues (2016): a new ten-session version of CBT (CBTi – for intensive) for non-underweight cases. ‘We have just completed and reported on a case series of about 100 patients, and we get results that are nearly as good as the 20 session evidence-based versions, like CBT-E and others.’ To be published.

[48] Lock, L., Le Grange, D., Agras, W.S.,  Moye, A., Bryson, S.W., and Jo, B., ‘Randomized Clinical Trial Comparing Family-Based Treatment to Adolescent Focused Individual Therapy for Adolescents with Anorexia’ in Arch. Gen. Psychiatry (October 2010), 67(10), pp. 1025-1032, http://tinyurl.com/a322bg7

Half the adolescents were given FBT, while the other half were given the most promising type of individual psychotherapy available at the time: AFT. AFT is designed to use the therapeutic relationship to foster independence, autonomy and self-management of anorexia nervosa symptoms.

The two approaches had similar results by the end of a year’s treatment, but FBT proved to be superior at 6- and 12-month follow-up. For instance, a year after end of treatment, 18 per cent of the AFT group had been hospitalised, as opposed to 4 per cent in the FBT group. And of those who had achieved full remission at end of treatment, 40 per cent of the AFT participants relapsed, against 10 per cent of the FBT participants.

Four years after end of treatment, among 79 adolescents who had been symptom-free a year after completing either FBT or AFT, only one in each group had a relapse. Le Grange, D., Lock, J., Accurso, E. C., Agras, W. S., Darcy, A., Forsberg, S., Bryson, S. W., ‘Relapse From Remission at Two- to Four-Year Follow-Up in Two Treatments for Adolescent Anorexia Nervosa’ in Journal of the American Academy of Child & Adolescent Psychiatry (25 August 2014) http://tinyurl.com/ks3jgjt

Note that this talking therapy (AFT) is quite different from talking therapies where the focus is for insights into childhood traumas. With AFT, ‘Patients learn to identify and define their emotions, and later, to tolerate affective states rather than numbing themselves with starvation. The therapist actively encourages the patient to stop dieting and to gain weight, and asks the patient to accept responsibility for food related issues’. Parents are only involved to ‘assess parental functioning, advocate for the patient’s developmental needs, and update parents on progress’.

[49] anorexiafamily.com/nice-guidelines-adolescent-eating-disorder-ng69 and https://www.nice.org.uk/guidance/ng69

[50] https://www.nice.org.uk/guidance/ng69

[51] 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

[52] From Jangled, writing on the Around the Dinner Table forum.

[53] Blake Woodside, director of the eating disorders program at Toronto General Hospital, quoted by Carrie Arnold in her book Decoding Anorexia (http://amzn.to/10Y2Una). He is co-author of ‘Relapse in anorexia nervosa: a survival analysis’ in Psychol. Med. (May 2004), vol. 34, no. 4, pp. 671–9, http://www.ncbi.nlm.nih.gov/pubmed/15099421

[54] Parents report huge benefits from learning DBT skills (dialectic behaviour therapy) along with their children at UCSD’s intensive family treatment aroundthedinnertable.org/post/ucsd-our-intensive-family-therapy-week-6316129

[55] Dr Sarah Ravin’s blog ‘Red Flags: How to Spot Ineffective Eating Disorder Treatment’ is a must-read if you’re on the hunt for treatment, or if you’re worried about your current therapist. http://www.blog.drsarahravin.com/eating-disorders/red-flags-how-to-spot-ineffective-eating-disorder-treatment.

[56] There is no standard training path, and you cannot assume anything. Some therapists have treated eating disorders for decades using older psychological models, and it takes more than a two-day introductory course for them to master the family-based approach. In countries without a national health service, training can be just about anything! In England, recently, the NHS overhauled eating disorder treatment for youngsters. Specialist teams were trained up fast, and all therapists must have regular supervision. Overall, the improvements have been fantastic. But there is no standard for training of therapists or supervisors. Some of these people may be treating your child or running multifamily groups after just two days’ training from the team at the Maudsley’s children and adolescents service. A few have had a day’s introduction to FBT when James Lock visits the UK. Some have had a few hours from Janet Treasure’s team on ‘New Maudsley’, after which they tell parents to be dolphins and incorrectly claim to be ‘doing FBT’. Many don’t know the difference between all these approaches and are ignorant of the manuals.
Scotland invites Lock in regularly for training in FBT. Some therapists are going through hundreds of hours of supervision from Lock’s team to become certified, while others treat patients after a two-day course. Others are generalist mental health professionals with no eating-disorder specialisation.

[57] I list online forums here: anorexiafamily.com/anorexia-nvc-mindfulness-links/anorexia-books-links-review

[58] A good piece by therapists Carolyn Costin and Alli Spotts-De Lazzer: ‘To tell or not to tell: therapists with a personal history of an eating disorder’ https://www.edcatalogue.com/tell-not-tell/

[59] Perhaps we sense that our clinicians don’t have much fun: Warren, C. S., Schafer, K. J., Crowley, M. E. and Olivardia, R., ‘A qualitative analysis of job burnout in eating disorder treatment providers.’ in Eat. Disord. (May 2012), vol. 20, no. 3, pp. 175–95, http://www.ncbi.nlm.nih.gov/pubmed/22519896

[60] UCSD: University of California, San Diego: Eating Disorders Center for Treatment and Research: http://eatingdisorders.ucsd.edu/. Among other things, they offer five-day intensive multi-family therapy.

[61] List of certified FBT therapists who do telemedicine: anorexiafamily.com/certified-fbt-therapists-family-based-treatment-who-skype

[62] The Maudsley hospital in south London provides a national eating disorders service (outpatient and daypatient) for children and adolescents https://www.national.slam.nhs.uk/services/camhs/camhs-eatingdisorders/. In north London, Great Ormond Street Hospital for Children has a Feedingand Eating Disorders Service. Both these London units accept referrals from CAMHS clinicians or consultant paediatricians anywhere in the UK and can give treatment or just a second opinion.

In Scotland, CAMHS can refer under-12s to the inpatient psychiatric unit (which has eating disorders expertise) at the Royal Hospital for Children in Glasgow.

[63] Laura Collins’ book Eating With Your Anorexic (http://amzn.to/WoVIiI) tells the story of how her daughter was treated within the family, using principles of FBT. Harriet Brown, in Brave Girl Eating (http://amzn.to/YFc395 ), tells the story of her daughter’s journey to recovery at home, also along FBT principles. The book includes useful and accessible accounts of the scientific knowledge about anorexia. Harriet Brown’s article on her DIY approach to treatment: ‘How to Put Together, and Work With, a Non-Maudsley Team’: http://maudsleyparents.org/workingwithanonmaudsleyteam.html

[64] I list online forums here: anorexiafamily.com/anorexia-nvc-mindfulness-links/anorexia-books-links-review

[65] Rebecca Peebles (9mn57 in): youtu.be/WiC4cd4uI9U?t=597

[66] anorexiafamily.com/individual-support

[67] It’s interesting to note, from Dr Sarah Ravin’s experience, that ‘Hospitalization during treatment with me was not related to treatment completion or treatment outcome, regardless of diagnosis.’ In other words, if you’re treating your child with FBT, a spell in hospital may be necessary, but after that, FBT is just as likely to succeed. http://www.blog.drsarahravin.com/eating-disorders/a-comparison-of-treatment-outcomes-an-bn-and-ednos/

A study following youngsters after an intensive inpatient program: Strober, M., Freeman, R. and Morrell, W., ‘The long-term course of severe anorexia nervosa in adolescents: survival analysis of recovery, relapse, and outcome predictors over 10-15 years in a prospective study’ in Int. J. Eat. Disord. (December 1997), vol. 22, no. 4, pp. 339–60, http://www.ncbi.nlm.nih.gov/pubmed/9356884

[68] Stuart B. Murray, Leslie K. Anderson, Roxanne Rockwell, Scott Griffiths, Daniel Le Grange,  Walter H. Kaye, ‘Adapting Family-Based Treatment for Adolescent Anorexia Nervosa Across Higher Levels of Patient Care’. Eating Dis: Journal of Treatment & Prevention (2015) 23(4) http://www.tandfonline.com/doi/full/10.1080/10640266.2015.1042317

[69] Risk assessment, physical examination and more on ‘Junior Marsipan: management of really sick patients under 18 with anorexia nervosa’. CR168, Royal college of psychiatrists, 2012. http://www.rcpsych.ac.uk/usefulresources/publications/collegereports/cr/cr168.aspx

[70] For an example of a clinician conveying a strong commitment to parents as partners, watch the video of Dr Rebecka Peebles speaking at Maudsley parents’ conference on ‘Eating Disorders: What Pediatricians and Parents Should Know’ (http://vimeo.com/50460378).

[71] Advice from clinician Xavier Amador in I am not sick and I don’t need help! How to Help Someone with Mental Illness Accept Treatment (http://amzn.to/WIW1en).

[72] Daniel Le Grange, Elizabeth K. Hughes, Andrew Court, Michele Yeo, Ross D. Crosby, Susan M. Sawyer, ‘Randomized Clinical Trial of Parent-Focused Treatment and Family-Based Treatment for Adolescent Anorexia Nervosa’ in J Am Academy Child & Ado Psych (2016), vol. 55, no. 8, pp. 683–692 http://tinyurl.com/z7rwsgr

[73] Dr Sarah Ravin (2016). Parent-focused treatment: an attractive alternative to FBT. http://www.blog.drsarahravin.com/eating-disorders/parent-focused-treatment-an-attractive-alternative-to-fbt/

[74] ‘Weight gain & kid in recovery?’ blog post by Amazonia-Love: amazonia-love.tumblr.com/post/147567439533/weight-gain-kid-in-recovery

[75] Dr Rebecka Peebles, 1:02:40 into this excellent talk: vimeo.com/50460378

[76] Waller, G., Cordery, H., Costorphine, E., Hinrichsen, H., Lawson, R., Mountford, V., Russel, K. (2007) Cognitive Behavioral Therapy for Eating Disorders: Comprehensive Treatment Guide (https://amzn.to/2TXHQzD)

[77] From the MARSIPAN guidelines, Royal College of Physicians, rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/college-reports/college-report-cr189.pdf Also Amador, X., I am not sick and I don’t need help! How to Help Someone with Mental Illness Accept Treatment (https://amzn.to/2I1p5Z0). Also DesertDweller’s blog relating to caring for an adult, in particular desertdwellergettingon.blogspot.co.uk/2010/10/being-parent-of-adult-loved-one-with.html and desertdwellergettingon.blogspot.co.uk/2014/11/what-about-hipaa-and-how-to-overcome.html. For the UK, the NICE guidelines have a lot of the involvement of families: nice.org.uk/guidance/ng69

[78] Young adults with anorexia: family-based treatment for 17-25 year olds anorexiafamily.com/family-based-treatment-young-adult

[79] In the UK, I think that Lasting Power of Attorney sets the bar too high to be much use: it only kicks in when the person is judged to not have the mental capacity to make decisions for themselves.

[80] Bulik, C., ‘The complex dance of genes and environment in eating disorders’. An insightful one-hour lecture on YouTube. Warning: several images of skeletal people, which I could do without (http://youtu.be/zi2xXEz0Jog).

[81] My video ‘The hero’s journey: resilience and wellbeing for parents’, youtu.be/HZgqolG3HeU

[82] anorexiafamily.com/individual-support

[83] She trained in the ‘Human Givens’ approach (http://www.hgi.org.uk/)

[84] Odet Beauvoisin, certified advanced practitioner of EFT www.eftkinesiology.co.uk She can treat by video call (Skype). There is a lot of research on EFT, including some randomised controlled studies (http://www.eftuniverse.com/research-and-studies/eft-research#review). I like how the technique dovetails with mindfulness and connection to physical sensations, and how even though it looks weird, there’s no bullshit.

[85] Dr Sarah Ravin’s tips: blog.drsarahravin.com/psychotherapy/how-to-choose-a-therapist

6 Replies to “Which eating-disorder treatments work?”

  1. Hi, I found reading your information and experiences so familiar with regard to how you have been treated and your battle to get the right help for your daughter. We are 10 months into our battle to actually get help for our daughter and ourselves. It is exhausting and we still are no further forward, just a lot of waiting and going around in circles with no actual help. Just lots of talking and dictating from the consultant! I have been researching and reading as much about her condition as I can.
    (OCD with disordered eating) The problems we face are similar to a child with AN as the OCD is preventing our daughter from eating but the difference is our daughter wants to eat but can't. I want to trust the professionals but they just don't get it. I want them to listen, think about alternative approaches, treat our daughter like a whole person and not just one of the hundreds they keep telling us they are treating! They make us feel that we should be grateful to be in the CAMHS system as many are still waiting. I need to learn how to get a second opinion and a referral to a specialist centre like the Maudsley London. Things are getting worse and yet CAMHS (South Glos) just keep doing so very very little to help. You have given me some hope that if we keep trying and questioning the CAMHS team we may eventually get some actual help. Thanks

    1. This sounds incredibly frustrating and inadequate and I really hope you get a specialist second opinion as soon as possible. I'm glad my information is energising you to seek this out. There are too many stories like yours all over the world. As you learn more about navigating the system in England, feel free to email me your findings, as I would like to write a blog post to give UK readers information about precisely what you're seeking: who to turn to when the first level of care fails – how to get a 2nd opinion – how to complain and get action. For now I don't know a huge amount and personally I might go to Citizens Advice, as I believe they have a health care arm with well-informed people.

  2. My son suffers from anorexia and I'd just like to say how amazing our CAMHS nurses, psychiatrist and medical staff have been. Just the best. We feel safe, secure and well informed. They are taking huge care of our family through the most difficult of times.

  3. Thank you for sharing your knowledge and advice.
    Are you familiar with Dr O'Toole´s book 'Give food a chance' and her clinic in Portland?

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