Which eating-disorder treatments work?

Last updated on January 23rd, 2024

This is the whole of Chapter 12 of 'Anorexia and other eating disorders – how to help your child eat well and be well'. I updated it in my 2023 book version. Here is the 2022 chapter.

I want you find excellent treatment fast, and not waste time with ineffective approaches! 

The book has numerous endnotes with references to research. Some of them feature here


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

Contents show

In Chapter 4 I outlined the essentials of treatment for an eating disorder. In this chapter we’ll look in more detail at what works. Ideally you can relax and ignore this chapter because you have a family doctor who got you promptly onto great specialists and you’re getting guided every step of the way.

But let’s acknowledge how stressful it is when we question the competence of the treatment providers. It can be more upsetting than the day-to-day work of looking after our children. We are entrusting our child’s life to others and we need to know the care is excellent.

What are the best methods? Who might have the up-to-date training as well as a lot of experience and skill? High fees are no indicators of quality. 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?[i] And what methods exactly are they using?

In countries without a national health service, such as the US, parents may be glad to have a choice of treatment provider,[ii] but there can still be waiting lists. Too many people face difficulties with medical insurance and accumulate large debts.

There is exhaustion also from driving huge distances to access treatment or to visit an ill child in hospital. Fortunately, therapy sessions by video call are now commonly available.

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.

Personally I was conscious that every therapist my daughter saw reduced her tolerance for therapy. 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 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.

In this book, by ‘therapist’ I mean ‘clinician’: any health professional, including psychotherapists, doctors, nurses, dietitians, occupational therapists, speech therapists, physiotherapists, and so on.

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 – this means treatment validated by research – 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

We have had centuries of parent blame in the field of eating disorders. Not too long ago it was still common to see ‘parentectomy’, where psychoanalysts believed parents should be kept away. I am grateful to the pioneers at the Maudsley hospital who postulated that parents might actually be an asset. Unfortunately old beliefs stick around and around the world there are still 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[iii] hospital visits. I frequently hear of clinicians who believe that parents have issues with anxiety, depression, control, over-attachment, under-attachment, avoidance, enmeshment or codependency. 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, that denial is being used as a protective mechanism, that causes must be uncovered and that patients need insight and motivation.

Clinicians have a genuine desire to treat and truly believe in their methods. 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.”[iv]

Don’t wait for motivation, readiness or insight

A great strength of a family-based approach is we treat children and adolescents without waiting for motivation or insight. Conversely, the illness may drag on or worsen if there’s a belief that your child needs motivation to recover. If the work doesn’t focus on making it possible for your child to eat today, but to move them along a ‘readiness’ scale within the ‘motivational interviewing’ cycle.[v]

Some people with anorexia – usually beyond adolescence – do have motivation to get well and get on with their lives. They’re fed up after years of the illness. And they’re more mature. But 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.

The ‘reaching rock-bottom’ fallacy

Tragically, when the only tool on offer is to build motivation, therapists and parents can resort to extremes. Watch out for the ‘reaching rock bottom’ principle.[vi] 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 hungry and weak and desperate. 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 in hospital.

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. I’ll tell you about the best methods recommended by health organisations worldwide.[vii]

For anorexia and for bulimia, the first-line treatment is a family-based approach – that’s 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:[viii]

  • For anorexia or bulimia: individual cognitive-behavioural therapy (CBT) specifically for eating disorders
  • For anorexia only: adolescent-focused psychotherapy (AFP)
  • For binge-eating disorder, the recommendation is for a guided self-help programme, then if necessary, group or individual CBT.

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 a family-based approach 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 hindrance.
  • Parents should be empowered to feed their child and to normalise eating and weight and behaviours, 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

The approaches this book supports come under many names. I’ve chosen the terms ‘family therapy’ or a ‘family-based approach’. If your treatment looks very different, yet it sounds good because it’s called ‘family therapy’, ‘FBT’ or ‘Maudsley’, then read on. There is some harmful confusion around names.

For instance, strictly speaking a treatment should only be called ‘FBT’ if there’s a clinician following the FBT manual. But ‘FBT’ had become quite an umbrella term, as has ‘Maudsley’ or ‘evidence-based treatment’, and this can leave you in the dark about what’s actually being delivered.

Here’s a quick guide (and I go into more detail on my website).

Is your treatment called ‘FBT’ (Family-Based Treatment), with some level of adherence to the FBT manual?[ix], [x]  Or is it perhaps called ‘FT-AN’ or ‘FT-BN’ (Anorexia/Bulimia-focused Family Therapy)? Does your clinicians’ training originate from Lock, Le Grange or their colleagues (mainly in the US)? Or from the Maudsley Centre for Child and Adolescent Eating Disorders in London?[xi], [xii], [xiii]  In the UK, are you getting NHS treatment from a Community Eating Disorder Service (CEDS)? If yes to any of these, you’re probably getting a family-based approach.

Are you getting Multi-Family Therapy (MFT)?[xiv] This is an adjunct to a family-based approach and totally compatible.

Are you getting ‘family therapy’? That might be great. The Maudsley Centre for Child and Adolescent Eating Disorders say that teen anorexia treatment is basically the best of systemic family therapy, taking into account the particularities of an eating disorder. But what I see is they’re not ‘just’ doing systemic family therapy. There’s a focus on practical action – meals, weight gain and so on.

If you’re offered family therapy with no emphasis on normalisation of eating or weight, then be very cautious.[xv] There are many approaches that call themselves ‘family therapy’, and if they don’t empower parents to support their child, they’re unlikely to be effective.[xvi]

Too many families in treatment centres are only offered ‘family therapy’ where parents, far from being empowered to act, are led to believe that the cause of the problem – and the solution – lies in how family members relate to each other. A really old-school family therapist may even believe that having a child with eating problems serves to distract a parent from their own issues. I know some brave parents who have endured blame, session after session, in the hope the process will save their child. Tragically, while the family dynamics is put under the microscope, the young person may lose weight, purge and over-exercise.

On to the next source of confusion.

If your professionals refer to ‘Maudsley’ or the ‘Maudsley Approach’, one hopes they mean FBT. But … now we get into an important source of confusion. There is also a ‘New Maudsley Method’, supported by a book[xvii] and workshops, and it’s quite different. It’s not a treatment, but a set of skills that are taught to parents, partners and other carers. It teaches good communication, and that’s always useful. However other aspects may slow the parents of a child or adolescent: waiting for the patient to be willing, working on motivation, on readiness for change, on insight. It’s confusing when at the same time a parent may be labelled as ‘accommodating’ or ‘enabling’. It’s hard to be labelled a ‘terrier’ when you’re being persistent about a meal. I’m unhappy when parents believe they should be gentle ‘dolphin’-like guides who may do no more than ‘nudge.’ So to be clear, New Maudsley does not feature in the recommendations for the treatment of young people, and you have to carefully pick which bits of the training are compatible with what is recommended while our children are young enough to expect our care.

FBT: the first phase is a rescue operation, with collaboration coming later as the person is more capable. New Maudsley, on the other hand, use collaboration throughout — hospital will do any required rescuing.

On my site:

* Family therapy for eating disorders: what is FBT / Maudsley?[xviii] *

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

If you’re in a hurry, here’s the main message: there is clear evidence 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. If for some reason family therapy really isn’t for you, then yes, there are other approaches.

How effective is Family-Based Treatment (FBT)?

Before family therapy came along, there was no scientific evidence that anything worked particularly well.[xix] 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) for family therapy, called it Family-Based Treatment (FBT)[xx] and conducted more randomised controlled trials.[xxi]

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.[xxii]

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.[xxiii] 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 (I explained this in Chapter 6).

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

It doesn’t work for everyone

Your child’s best chances, statistically, are with a family-based approach. But as the figures show, this does not work for everyone. Few treatments in the medical world work for 100 per cent of patients. If the method isn’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. Note that your child will continue to benefit from your support whatever the type of treatment: family matters whether the treatment is family-based or individual.

Family therapy for anorexia in younger 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 younger children, who generally have little capacity for the introspection required of talking therapies, and where it is natural for parents to be making decisions.[xxv]

Family therapy for anorexia in adults and younger adults

A family-based approach can be adapted for adults. There’s been a bit of research on FBT-TAY for 17- to 25-year-olds (‘Transition-Age Youth’). It involves more teamwork, more buy-in from the young adult, and less of parents making the decisions. All the same, parents are expected to make a commitment to help their child gain weight and normalise eating. A method I’d like to see more of, as it makes good use of parents in a non-judgemental way, is TBT-S (Temperament-Based Therapy with Supports). Given that most adult treatment disempowers parents the minute their child turns 18, most parents who want to stay involved find their own way. The main point is they actively support meals.

On my website: 'Adults or young adults: treatment for a restrictive eating disorder' and 'Young adults with anorexia: FBT-TAY family-based treatment for 17-25 year olds'

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 research, so you can decide whether to use a family-based approach or direct your child towards individual therapy. Personally I think that if your child has never had your active support in treatment, there is plenty of hope that things will improve when you do start.

“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.”

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.[xxviii]

What happens in a family-based approach?

Parents can easily read both the FBT manual and Maudsley service manual.[xxix] 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).[xxx] Clinical 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 dietitian. Parents are seen as 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 and normalising behaviours (Phase I). You take responsibility for 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 2 begins (see Chapter 10). This is a time when an age-appropriate level of autonomy is gradually handed back to the young person. Sessions may become less frequent – the manual allocates five sessions for this phase. Finally, Phase 3 (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.[xxxi]

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.”[xxxii]

Is it OK to tweak the method?

I discuss this in Chapter 4. Short answer: the greater people’s knowledge and experience (yours and your clinicians’) the more likely that any modifications will be well done, to truly suit your child’s needs. Conversely, when people are not very experienced, there’s a risk they ‘don’t know what they don’t know’.

Individual therapies

I’ll now describe CBT and AFT, as they are recommended if a family approach is ‘unacceptable, contraindicated or ineffective’.[xxxiii] They are individual therapies, meaning your child will mostly meet the therapist one-to-one – without you – and will mostly be expected to progress through their own efforts.

If a young person in individual therapy can’t take responsibility for themselves, if they keep losing weight, and if therapists don’t understand parent-power, the child has to get rescued by a hospital.

Sometimes an individual therapy can usefully complement and finish off the work done in family therapy.

Either way, think carefully about the possibility that you will be excluded from your child’s treatment. More on that further down.

Cognitive behavioural therapy (CBT) adapted for eating disorders

Cognitive behavioural therapy (CBT) is a common treatment for all sorts of mental health issues. In its general form it helps patients change their thoughts in order to change their feelings and then change their behaviours. That’s not much use with eating disorders so there’s a variant of CBT that puts the focus on normalising behaviours and on nutritional restoration – thoughts and feelings will evolve as a result.[xxxiv] From here on, when I talk of CBT, that’s what I’m referring to.

If you are considering CBT for your child, whatever the type of eating disorder, I recommend you read more about pros and cons on my website[xxxv].

Adolescent focused individual therapy (AFT)

The other evidence-based individual treatment on offer is adolescent focused individual therapy (AFT) – in the UK it’s called ‘adolescent-focused psychotherapy for anorexia nervosa’ (AFP-AN).[xxxvi] It focuses on the young person’s ability to change their own behaviours, restore weight, and develop emotional awareness. Parents only have a supporting role.

Research comparing AFT and FBT found that for most youngsters with anorexia, FBT works better than AFT – twice as well. But as FBT doesn’t work for everyone, the conclusion is that ‘AFT remains an important alternative treatment for families that would prefer a largely individual treatment.’[xxxvii]

Lots more, including pros and cons, on my website:

* Adolescent-focused therapy (AFT) for anorexia: how does it compare with family-based treatment? *

* Adolescent-focused therapy (AFT): a guide to the joint runner-up treatment for anorexia *

Psychotherapy as an adjunct to family therapy

Talk, on its own, will rarely fix an eating disorder. Physiology, brain wiring and habits trump intellect:

“When treating anorexia nervosa, be aware that:

  • helping people to reach a healthy body weight or BMI for their age is a key goal and
  • weight gain is key in supporting other psychological, physical and quality of life changes" [xl]

Most people with anorexia, especially while malnourished, have some degree of anosognosia. This is 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. This means that talk rarely achieves anything. Besides, many youngsters are very private and will not engage with a psychotherapist. In short, you cannot rely on psychotherapy. You have to crack on with nutrition and behavioural work.

Remember that many psychological issues resolve as nutrition and helpful habits are restored:

“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.”[xli]

But might some individuals benefit from psychotherapy sooner rather than later? Those with anxiety, depression, traumas, OCD? The autistic youngsters? Some young people are begging for help. Sometimes they hope that psychological help with enable to be happy while they keep restricting. But others really do want acknowledgement that they are living, suffering human beings, not an illness to be fixed. Psychological support can be refused on the basis that it’s not standard protocol –not in the FBT manual. 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.[xlii]

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.

Psychotherapists don’t have your parent-power

Whether or not you try psychotherapy for your child, remember your own precious powers as loving, dedicated, wise mothers and fathers. Some parents are far too quick to abdicate their power in the belief that only a therapist can fix their child’s mind. Yet you provide a healing balm every time you connect, every time you say, ‘Tell me more. I’m interested. I care. I feel for you.’ Even when they reject you. Even when you can’t seem to say anything helpful (see Chapters 13 and 14 for help with communication). 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?

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. 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. In this case, aren’t the sessions a waste of resources? 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. My daughter hated the ugly institutional rooms, the plastic toys piled up in the corner, and the women’s magazines (‘Get beach-body ready!!!’) littering 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? In a country with a national health service, is your allocated clinician well specialised? If you feel harm is being done, should you hunt for private treatment or even go solo?

Is your specialist a specialist?

How do you know a therapist will deliver good family therapy? There is no universal criterion. The only accreditation I know of is certification for FBT therapists. Very few have it.  Certified FBT therapists have had extensive (and expensive) training and supervision by Lock and Le Grange’s team and are listed on the FBT training website.[xliv] Many can now work by video call. If your therapists aren’t on the list they may still be excellent… or not. In the US, there is also a certification for eating disorder clinicians in general (not just family-based).[xlv]

So the best we can do is pick up our courage and ask clinicians about their training, their experience, and their methods. Experienced clinicians tell me that a few days’ training in a family-based approach, or reading a manual, is not enough to really understand the approach[xlvi] – especially so if you’ve been using older eating disorder treatments for years. If you don’t have access to a therapist trained and supervised to a high level, and with years of family-based experience, be on the alert, as outdated concepts may leak out.

“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.”

Window dressing or ignorance

Clinicians all say they use evidence-based treatment. We have to assess whether that’s true or window-dressing. Clinicians don’t all follow the science.[xlvii] One reason is human nature: most humans trust their opinions and suffer from an overconfidence bias. We mean well but ‘we don’t know what we don’t know’.[xlviii] 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.’

Another reason is that it’s expensive and time-consuming to keep up to date. So many treatment providers – including expensive private centres – keep doing what they’ve been doing for the last few years.

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?

  • She recovered at home.

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 a couple of articles in the notes, which will alert you to common red flags.[xlix]

If the red flags are not there, here are questions you could ask directly or indirectly. Hopefully the clinician will love how well-informed you are, rather than be offended.[l] 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/FT-AN/FT-BN, in the case of anorexia or bulimia]
  • If not a family-based approach, 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 responsibility for meals and for 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, since he feels fat and wants 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 and will evolve]
  • 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 – parents are central players within the treatment team]
  • 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 co-occurring 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 is autistic/has 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 a family-based approach? [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?[i] 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? [If they haven’t studied the FBT or Maudsley service manual, I’m not impressed. 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 importance of early intervention]
  • [i] 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.

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 visit online forums[lii] 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.

Clinicians who previously had an eating disorder

Many eating disorder clinicians 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).[liii]

Some 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 clinician needs to be truly recovered. 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. Most obviously, someone who isn’t afraid of weight gain, has 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 if they are now recovered? I’ve never asked, but it’s a valid question. Be non-judgemental. This is about assessing what may or may not help your child.

Does a therapist seem to be a bit too much into exercise? 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 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 for me is normally 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 a nursing aide, no more than 25 years old,  who was one of the wisest, kindest, most empathic people I’ve met.

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 have found this makes 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. The clinician rebukes us for reading ‘too much’. We are all trying to use logic on something that has become a highly emotional issue.

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.[liv] They mean well and have worked very hard for us. We imagine they are so vulnerable that we will hurt their feelings if we leave. However, ‘nice’ rarely meets human needs.

Sometimes we put therapists on a pedestal. 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.

Parents’ self-confidence can be so low that they get confused. This happens when clinicians blame them for the illness, diagnose them as over-controlling and codependent, and insist that their child would eat if they backed off. Who to trust? Your spouse may be telling you that the doctors know best. 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 name your concerns and consider your options. You have to make these decisions for yourself, but it helps to learn from other people’s experiences.

No good treatment locally?

If you can’t find a good therapist locally, there are other options. Therapists can treat by video call.[lv]  Some parents travel huge distances for a few days of intensive learning and family therapy.[lvi] If you’re in the UK your GP acknowledges that treatment isn’t meeting your needs, they can release funds for treatment elsewhere, either at an NHS centre of excellence or a private clinic.[lvii] Of course, do your research to make sure you’re not going from the frying pan into the fire.

Family treatment the DIY way

Finally, some parents bravely go it alone. If that seems daunting, be aware that you are in good company. You may benefit from reading about the experiences of people who have done this. [lviii]

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 who will 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 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? Parents and therapists all over the world share their wisdom online.[lix]

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.”[lx]

Parent-coaching, home support and day treatment

Since you’ve got to get your child to eat, and you need guidance with that, your clinician may invite you to have a ‘family meal’ or ‘mini meal’ during a session. Also, early sessions include a review of how meals went, what helped and what didn’t. In our case we still couldn’t get our daughter to eat consistently, and that’s why she had 11 months in hospital.

Some providers – not enough of them — can send a professional to your home, either to feed or to demonstrate how it can be done.[lxi] Sometimes we just need to break a deadlock, to get one success. When that doesn’t work either, ideally the next step is an intensive day program: for several meals a day, our child gets back into the swing of eating, and parents get education and coaching.

Outside the US, these are few and far between. You may, like us, have only two options: home or inpatient unit. As home meals were not consistently working, my girl had 11 months inpatient and countless family therapy sessions. What a waste! We made repeated requests for coaching at home and after more than a year, we got it. With just four lunches at our house we became competent to feed.

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.

What can you do if you just need that little extra to succeed at home? Ask, and keep asking. Healthcare, social care , psychiatric services or non-profit organisations may provide carers. 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, she may enjoy the break from you, and when you need a rest. Finally, your child may gel with a competent ‘recovery coach’ who will help her eat or take on challenges.[lxii]

Hospitals and eating disorder units

When we can’t manage meals at home then a higher level of care is needed.[lxiii] It could be a paediatric (medical) ward if your child needs medical stabilisation. Having to eat there can provide a bit of a ‘reset’: if youngsters manage to eat with their parents on the ward, the transition back home may work well. When someone needs longer support, when they need supervision for purging, self-harming or suicidality, then a mental health/psychiatric/eating disorders inpatient unit may be indicated. When people simply cannot eat, either type of unit may provide nasogastric (NG) tube feeding. If your child needs this, take heart: they may readily accept it because it allows them to be nourished without guilt. If they fight it, there is published guidance on making NG feeding as gentle as possible.[lxiv]

In the UK, parents tend to believe that home is infinitely better than a unit. Meanwhile many US parents feel bad about keeping their child at home, even when they’re succeeding with refeeding. So who’s right? Research indicates that home is better… but only if you’re succeeding.[lxv] At times some youngsters do very much need hospitalisation. After that the work at home resumes, because no institution can provide complete recovery.[lxvi]

Wards and inpatient units can be tough for some autistic youngsters, if they are not adapting for particular needs and sensitivities. If you have worries in that respect, you’d be justified in insisting on all possible resources to treat at home.[lxvii]

The first hurdle in getting your child into hospital might be a waiting list. Another hurdle – shockingly unscientific – comes with units that only admit low-BMI patients.[lxviii] I recall a family who got blocked in this way. The girl’s outpatient team wanted her admitted fast as she was deteriorating daily. The inpatient unit wouldn’t budge because her BMI was still ‘normal’. They wouldn’t factor in the ongoing weight loss, nor the parents’ heroic work in slowing her decline on all fronts. One of the therapists advised the parents, in confidence, to let the girl restrict, to get her admitted sooner rather than later.

Parents, you’re unlikely to love everything about an inpatient unit, but you can insist on aspects that really matter. Chances are these are listed in published standards that you can quote and insist on.[lxix]

Why would my child eat in hospital and not at home?

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. I’m told that in spite of all this, they can experience a flare-up of emotions around a patient who’s not eating, and they are quite awed by what we parents do.

Eating disorders inpatient (residential) units

If you have a choice of eating disorder unit, be on the alert for the old model where the clinic would get a patient’s weight up, sprinkle in some therapy, and discharge with no attention to transitions. Because the emphasis was on autonomy and self-responsibility, no support would in place back home. The person would not manage to keep up with normal life and they’d get in a revolving door situation, where their weight would drop and they’d get re-admitted.

Inpatient or ‘residential’ 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.[lxx] Consider for instance that traditionally, dietitians in hospitals devise meal plans in collaboration with patients (I rant about this in Chapter 6). The whole ethos changes when it’s the parents who choose the food.

Nowadays the good units get parents involved in meals in the unit. Then there are increasingly long home visits – staff may at first come and assist. When your child manages meals over several days back home, you know they’re ready for discharge and that the transition is likely to be successful.

Medical (paediatric) wards

Increasingly (and quite rightly in my view), when care at home isn’t working, the first step is a short stay in a medical (paediatric) hospital ward. A decade ago this was a terrible option because the staff didn’t know what to do with eating-disorder patients. But things have moved on. Many paediatric units now follow protocols (pathways) developed in collaboration with specialist services. And throughout the hospital stay, the outpatient experts are working with the ward staff and with parents. Parents get skills to feed their child and 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 higher level of care.

Tips: when your child is in a paediatric or eating disorder 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 there are still some treatment units that 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.

  • 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.
  • Ask the unit what their aims are (Safety? Medical stabilisation? Weight recovery? Some level of mental recovery?) What are their criteria for discharge?
  • We saw in Chapter 6 how weight gain should be rapid. If meals or calories fed by NG tube are not providing that, why?
  • If your child is at risk of self-harm or suicide, what measures are in place? Where necessary, the hospital must provide 24/7 one-on-one supervision.
  • If NG tube-feeding under restraint may be required, check that staff use the latest guidance to save life while also minimising distress.[i]
  • If your child autistic, discuss needs that must be accommodated (e.g. a busy dining room might be the worst place for them to manage a meal)[ii]
  • 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. 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 it’s distressing to think of your child being hospitalised for as long as our daughter was. Most stays are shorter. You have so much more knowledge than I did. Still, some youngsters are hit particularly hard by the illness, especially if there are complications with other mental health conditions. I have a friend whose autistic daughter needed tube-feeding in inpatient units for three years. The parents found ways to make this long period meaningful and rich with loving connection. The girl is now recovered.
  • I’m so 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’d have been in a revolving door of decline and re-admission.

Parents have 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 pushing for her to go 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 usually passes after a few days, but at first it 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 very grateful at the start 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 girl was being rescued by competent and kind professional and this made us luckier than many people.
  • 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. Your child needs you to be very well, so that you can advocate for her while she’s in hospital and resume the hard work 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 was home-based. 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 situations 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.”

On my site:

* Can hospital equip you for family-based treatment? A parent’s inspirational account*

Hospital accident and emergency units

If you have urgent concerns about your child’s health, take them to your out-of-hours GP service or your accident & emergency unit. This can be reassuring and helpful, especially if the eating disorders service set up instructions for this to trigger action. Sometimes an admission to a medical ward is speeded up this way. Be warned, though, that these units can also be very disappointing. 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.’ To make sure that the right tests are carried out, go armed with guidance listed in the endnotes.[lxxiv]

Parents and clinicians in partnership

When clinicians stand on a pedestal, competent parents cannot contribute to problem-solving, and can easily become powerless victims. I hear of professionals who intimidate, blame, who refuse to discuss options. Even their team members don’t dare oppose them. I speak to parents who don’t dare to upset or anger the clinician, for fear their child might get treated worse. We really need teamwork and respectful relationships.

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

Here’s a trivial example to illustrate how even a lovely clinician can inadvertently create distance. Some of our professionals called us ‘Mum’ and ‘Dad’. I found it hilarious to see my husband being called Dad, but it drove him crazy. ‘Take a seat, Dad. How was your week, Mum?’ Grrr!

Experts are there to contribute their valuable expertise.[lxxv] 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 of 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?’[lxxvi]

Plan ahead to make sessions fruitful

During therapy session, we tend to let clinicians 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, from the start, the topics we really need help with. With your partner, prepare a list of priorities 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 a validated variant (‘separated’ or ‘parent-focused’) where parents talk with the therapist separately.[lxxvii]

With our best therapist, I had a weekly phone call 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. It spared my daughter shame or guilt. It protected her from discussions about upcoming challenges, which tended to raise 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 we feel our therapist is barking up the wrong tree, and perhaps that’s because there are things they need to know which we haven’t yet told them. We saw in Chapter 10 how crucial this is when moving a child towards independence.

Whether a family does better with conjoint or family-focused family may depend on the parents’ ability to care for their child, and how much the child is able to collaborate.[lxxviii] 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 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 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.[lxxix] A therapist will then encourage them to get their own treatment in parallel. I imagine that there is no problem as long as the parent is on the alert for any ambivalence or contradictions. We all do, because we all live in a society that spreads toxic messages about food and weight.

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.

Parents want advice

This bit is for clinicians, mostly. For parents, the message is: if you need advice, keep asking for it. Be specific.

Clinicians, I see harm being done at two ends of a spectrum. Some give instructions in a dogmatic, no-room-for-discussion way. That discounts the expertise the parent has on their child (and even perhaps on the learning a parent gained during hours of research). At the other end of the spectrum, there’s a refusal to give advice. In FBT you may have been taught 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.

Well, we parents find that dispiriting, frustrating, and we don’t want to make mistakes that hurt our child.

“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 our child had a heart condition, the specialists would answer our questions. With eating disorders, we want to learn from your expertise, your experience, not by trial and error.

“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?).”

Of course, advice-giving is an art. 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.”

I know, from training clinicians, that some were never taught the practical skills we parents need. But I have also seen 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 that was the expectation.

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 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. So 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?

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. The link between clinicians and school, for instance, was beautifully handled. Our daughter’s education never fell behind. 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. Can you spare her from attending so many appointments, so that she only goes to those that are directly useful to her?

Most importantly, is everyone singing from the same hymn sheet? If psychiatrists, nurses, therapists, counsellors, social workers, teachers and coaches are not well integrated in an eating disorders team, they may pull in opposite directions, and your child is piggy in the middle.

Say you are (in my opinion) lucky and you get an eating disorders specialist who wants you, the parent, to take responsibility for your child’s meals. But say your underweight child also sees a dietitian who negotiates meal plans with her, a doctor who announces she doesn’t need weight gain, a psychologist who declares that as an adolescent she needs independence, a counsellor suggesting she’d be less anxious if she ate low-fat, 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, she is using her eating disorder as a defence mechanism. See the problem?

The experts each believe in their own experience and competence. They each believe their knowledge is up to date. I know that some are gritting their teeth and tearing their hair out about some of their colleagues’ methods, but there’s hierarchy and politics, and a professional can’t easily tell a parent, ‘You’re right, and my colleague/my boss is wrong.’

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.

Don’t get excluded from your child’s therapy

Is your child about to get some individual psychotherapy? As mentioned earlier, this may be a fruitful adjunct to family therapy. To avoid harm, I suggest that you first establish how information will flow. Check that you will not be excluded from important decisions, and that your parental authority will not be overridden.

In individual therapy, 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. You will mostly be sitting in the waiting room.

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 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 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, in a naïve belief that your child tells them the truth.

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 them apply learnings to 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 you 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 threshold. 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. When my daughter was seventeen and we tried to complement our work with CBT, we discovered how easily we could get overruled. The CBT therapist had been trained by the best and was part of an FBT team. We had explained our girl’s remaining difficulties with food and exercise, and we’d sent growth charts. Yet in four sessions of listening to my bright, bubbly girl, this therapist decreed that she was well, could stop weight gain, could join a gym and end the therapy. It took a while to undo the damage.

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 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 whose parents quickly and successfully brought her back to a healthy weight through a family-based approach. The clinical team skipped the following phases of family-based treatment (Chapter 10) 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 daughter ate tiny, obsessively-prepared meals alone in her bedroom. They kept sending the therapist a list of symptoms and they requested joint sessions, but the responses were bland: don’t worry, things take time, your daughter needs to learn to take responsibility. When the girl became medically compromised and the parents still couldn’t get her to eat, it was a hospital that had to ‘take responsibility’.

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 at an emotional level she equated 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. My girl did want help, though, and welcomed the idea of me joining the sessions as an intermediary – a translator of sorts. I knew what her issues where and what an EMDR therapist needed to know. Frustratingly, the psychologist thought that my presence would be weird. It’s not. EMDR with very young kids is routinely done with the help of a parent. And so we lost our chance to give my daughter resilience against similar incidents in the future. Had we succeeded, I wonder if she might have refrained from dieting, some years later, when a comparable bullying situation arose.

More on this website :

* Eating disorders: understand where psychotherapists are coming from *

Confidentiality

When you are evaluating treatment providers, enquire about their stance on confidentiality. When your child is getting individual therapy it’s a crucial issue. 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.[lxxxi] 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 lab 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 that they can withdraw consent any time.

A basic element of confidentiality in individual therapy is to guarantee a patient’s privacy, except if there’s an indication 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.[lxxxii] 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 about restricting or self-harming behaviours is withheld. 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:

“From the legal point of view, confidentiality and lack of patient consent does not prevent clinicians from receiving third party information from families; patient consent is only necessary for providing confidential patient information.”[lxxxiii]

When you do give information to a therapist, first have a compassionate conversation with your child about it, if you can. 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 willing 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.

Old enough to refuse treatment

“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.[lxxxiv] 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. I encourage parents to be assertive in their caring role whatever their child’s age,[lxxxv] 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 anosognosia is part of the illness. Even when people do realise they need help, the fear of eating and gaining weight can stop them from willingly undergoing 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 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 rather than part of the solution, everybody suffers.

I have friends whose 18-year-old willingly entrusted her care to her parents by giving them power of attorney. Yet the local eating disorder services would only treat her if she checked herself in of her own accord. This was just too hard – she needed her parents to carry the burden of decision-making. This story ends well: she eventually got better at home, without therapists, supported by her parents.

To find out what the laws are in your country,[lxxxvi] 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[lxxxvii] 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 (Chapter 14). 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.[lxxxviii]) 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. See my website for some good stories and links.

On my site: Adults or young adults: treatment for a restrictive eating disorder[lxxxix]

Therapy, coaching and emotional support for parents

It is ironic that while children may endure ineffective psychotherapy, the people who badly need psychological support – the parents – only get to perform the taxi service. In my ideal world, all parents would be offered individual support (described as counselling, coaching, or psychotherapy), as well as group support.[xc] 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. My own hunt started when I was regularly bursting into tears in the most inappropriate of places (leading to a pathological attachment to my sunglasses). And 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,[xci] 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 parents who care for an ill child. There are parental acts of heroism going on all over the planet, day in, day out.

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 every few minutes, throwing a ten-pound note in. 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. My request was for help to 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. She needed me to talk about my childhood, so could have 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.

After one session with my psychodynamic therapist, the only way for me to get prompt support was to go private. It really hurt to discover the going rates. 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.[xcii] 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)[xciii] and I stuck with her for her human qualities – and because I could see immediate results that lasted. 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.[xciv] 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: if your therapist doesn’t know much about eating disorders, they may be shocked and judgemental about your child’s behaviours. 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:

Three routes out of post-traumatic stress disorder (PTSD)


More on this topic

* Next: Chapter 13: Powerful tools for well-being and compassionate connection *

For more on standards in England, on this site

England’s eating disorder treatment standard: a model for the rest of the world?

What’s the best eating disorder treatment for children and young people? The very latest guideline from NICE


Endnotes

[i] 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/

[ii] Port in a Storm: F.E.A.S.T guide: how to choose a treatment team in the US simplebooklet.com/treatmentguide

[iii] 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.

[iv] 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.

[v] How ‘New Maudsley’ differs from a family-based approach: anorexiafamily.com/mealtime-management-support-fbt-family-based-treatment

[vi] See for instance, Beverley Mattocks’ account in Please Eat . The ‘rock bottom’ principle has been popularised by accounts from recovered addicts, but we should not generalise to eating disorders

[vii] Academy for Eating Disorders (AED): 'A guide to selecting evidence-based psychological therapies for eating disorders' (2020) aedweb.org/resources/online-library/publications
For the UK, I explain standards and the NICE guidelines: ‘England’s eating disorder treatment standard: a model for the rest of the world?’ anorexiafamily.com/nhs-england-commissioning-guide-eating-disorders-access-waiting and ‘What’s the best eating disorder treatment for children and young people? The very latest guideline from NICE’ anorexiafamily.com/nice-guidelines-adolescent-eating-disorder-ng69
For the US: 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, doi.org/10.1080/15374410701817832 As a result, The National Institute of Mental Health recommends FBT for the treatment of young people with anorexia: nimh.nih.gov/health/publications/eating-disorders/index.shtml See also Chapter 4.

[viii] This is according to England’s NICE guidance. Similar in many other countries.

[ix] FBT manual by Lock and Le Grange: amzn.to/3jZKpPW

[x] 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.

[xi] Minimum 4-day training (which sounds very little to me) given to experienced therapists in many UK eating-disorders teams (though Scotland is mostly FBT-trained).

[xii] 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: South London and Maudsley NHS Trust, Specialist Child and Adolescent Eating Disorder Service (CAEDS) mccaed.slam.nhs.uk 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.

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.’

In North London, Great Ormond Street Hospital for Children has a Feeding and Eating Disorders Service which UK paediatricians or CAMHS can refer your child to. https://tinyurl.com/v2ymzrp

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.

[xiii] Ivan Eisler, Mima Simic, Esther Blessit, Liz Dodge and team (2016), Maudsley service manual for child and adolescent eating disorders mccaed.slam.nhs.uk/wp-content/uploads/2019/11/Maudsley-Service-Manual-for-Child-and-Adolescent-Eating-Disorders-July-2016.pdf

[xiv] 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 (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.

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 this, showing better outcomes when families receive multifamily therapy as well as single family therapy: Eisler, I., Simic, M., Hodsoll, J. et al. A pragmatic randomised multi-centre trial of multifamily and single family therapy for adolescent anorexia nervosa. BMC Psychiatry 16, 422 (2016). doi.org/10.1186/s12888-016-1129-6

[xv] 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 with ‘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. 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. 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’. All the therapists worked in specialist eating disorder services and had an average of 6 years of experience in treating adolescent anorexia.

[xvi] Fisher, CA, Skocic, S, Rutherford, KA, Hetrick, SE. Family therapy approaches for anorexia nervosa. Cochrane Database of Systematic Reviews 2019, Issue 5. cochranelibrary.com/cdsr/doi/10.1002/14651858.CD004780.pub4/information The conclusion is there’s insufficient evidence to determine if ‘family therapy’ presents any advantage over psychological or educational interventions. This is not surprising as all kinds of family therapy are lumped together.

[xvii] Treasure, J., Smith, G. and Crane, A., Skills-based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method. amzn.to/2VXpGUM

[xviii] anorexiafamily.com/mealtime-management-support-fbt-family-based-treatment

[xix] 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, 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, 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.

[xx] The manual is :Lock, J., Le Grange, D., Agras, W. S. and Dare, C., Treatment Manual for Anorexia Nervosa: A Family-Based Approach https://amzn.to/2UyqXfK
For an overview of what FBT is (and is not): Rienecke, R.D., Le Grange, D. The five tenets of family-based treatment for adolescent eating disorders. J Eat Disord 10, 60 (2022). doi.org/10.1186/s40337-022-00585-y

[xxi] For a summary of the research findings on family therapy, see Rienecke, Renee D. ‘Family-based treatment of eating disorders in adolescents: current insights’ in Adol health, med and therapeutics (Jun 2017), vol. 8, pp. 69-79 https://pdfs.semanticscholar.org/d3d1/65e737dceeda802a134bd86c37b2ffda6ddf.pdf

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

[xxii] 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.

[xxiii] Lock and Le Grange tell me that unfortunately they don’t have the data to retrospectively check this out

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

[xxv] 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

[xxvii] https://anorexiafamily.com/treatment-adult-anorexia-eating-disorder/

[xxviii] '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

[xxix] Ivan Eisler, Mima Simic, Esther Blessit, Liz Dodge and team (2016), Maudsley service manual for child and adolescent eating disorders mccaed.slam.nhs.uk/wp-content/uploads/2019/11/Maudsley-Service-Manual-for-Child-and-Adolescent-Eating-Disorders-July-2016.pdf
Lock, J., Le Grange, D., Agras, W. S. and Dare, C., Treatment Manual for Anorexia Nervosa: A Family-Based Approach https://amzn.to/2UyqXfK

[xxx] 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

[xxxi] Dr Sarah Ravin on Phase 3: blog.drsarahravin.com/eating-disorders/navigating-phase-iii

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

[xxxiii] NICE guidance: anorexiafamily.com/nice-guidelines-adolescent-eating-disorder-ng69 and nice.org.uk/guidance/ng69 The thorough review in England leading to the NICE guidance (2017): nice.org.uk/guidance/ng69 I explain it in anorexiafamily.com/nice-guidelines-adolescent-eating-disorder-ng69

[xxxiv] Le Grange, D., Eckhardt, S., Dalle Grave, R., Crosby, R. D., Peterson, C. B., Keery, H., Lesser, J., et al. (2020). ‘Enhanced cognitive-behavior therapy and family-based treatment for adolescents with an eating disorder: a non-randomized effectiveness trial’ in Psychological Medicine, 1–11. doi.org/10.1017/s0033291720004407 confirming that while CBT-E produces promising outcomes, FBT is the first port of call for youngsters with anorexia

[xxxv] anorexiafamily.com/CBT

[xxxvi] The manual is ‘Adolescent-Focused Therapy for Anorexia Nervosa’ by James Lock: https://amzn.to/3o5QivH

[xxxvii] 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.

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.

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

[xxxviii] https://anorexiafamily.com/fbt-v-aft-adolescent-focused-therapy-anorexia

[xxxix] https://anorexiafamily.com/aft-adolescent-focused-therapy-anorexia-afp-an

[xl] Official guidance for England: NICE (2017): nice.org.uk/guidance/ng69/chapter/Recommendations

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

[xlii] feast-ed.org/treating-suicidality-in-eating-disorders-how-dbt-skills-help-families-navigate-suicide-and-self-injury and aroundthedinnertable.org/post/ucsd-our-intensive-family-therapy-week-6316129

[xliii] anorexiafamily.com/failing-therapy-eating-disorders-anorexia

[xliv] 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 video call on anorexiafamily.com/certified-fbt-therapists-family-based-treatment-who-skype.

[xlv] Is Your Eating Disorder “Specialist” Really a Specialist? by Alli Spotts-De Lazzer and Lauren Muhlheim kantorlaw.net/blog/2019/march/is-your-eating-disorder-specialist-really-a-spec

[xlvi] 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.

[xlvii] 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

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

[xlix] Dr Sarah Ravin on ‘Red Flags: How to Spot Ineffective Eating Disorder Treatment’ blog.drsarahravin.com/eating-disorders/red-flags-how-to-spot-ineffective-eating-disorder-treatment and Alli Spoots-De Lazzer & Lauren Muhlheim on ‘Is Your Eating Disorder “Specialist” Really a Specialist?’: kantorlaw.net/blog/2019/march/is-your-eating-disorder-specialist-really-a-spec

[l] Also FEAST of Knowledge 2020: questions to ask youtu.be/4mxOTrWijLQ?t=1595

[li] 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.

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

[liii] 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/

[liv] 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

[lv] My incomplete list of certified FBT therapists who do telemedicine: anorexiafamily.com/certified-fbt-therapists-family-based-treatment-who-skype

[lvi] 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.

[lvii] The Maudsley hospital in south London provides a national eating disorders service (outpatient and daypatient) for children and adolescents mccaed.slam.nhs.uk. In north London, Great Ormond Street Hospital for Children has a Feeding and 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.

[lviii] 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.

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

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

[lxi] Usually it’s a nurse on the mental health team, with variable expertise. See also my article ‘Professionals who help people with an eating disorder to eat at home’ anorexiafamily.com/professional-home-meal-support-eating-disorder

[lxii] Carolyn Costin trains recovery coaches: carolyn-costin.com/interns-and-coaches

[lxiii] 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.

[lxiv] NG tube feeding: parents’ questions – on my website anorexiafamily.com/ng-tube-feeding-anorexia

[lxv] Gowers, S. G., Clark, A., Roberts, C., Griffiths, A., Edwards, V., Bryan, C., Smethurst, N., Byford, S., & Barrett, B. (2007). Clinical effectiveness of treatments for anorexia nervosa in adolescents: randomised controlled trial. The British journal of psychiatry, 191, 427–435. doi.org/10.1192/bjp.bp.107.036764
Also Madden, S., Miskovic-Wheatley, J., Wallis, A., Kohn, M., Lock, J., Le Grange, D., Jo, B., Clarke, S., Rhodes, P., Hay, P., & Touyz, S. (2015). A randomized controlled trial of in-patient treatment for anorexia nervosa in medically unstable adolescents. Psychological medicine, 45(2), 415–427. doi.org/10.1017/S0033291714001573
Also Herpertz-Dahlmann, B., Schwarte, R., Krei, M., Egberts, K., Warnke, A., Wewetzer, C., Pfeiffer, E., Fleischhaker, C., Scherag, A., Holtkamp, K., Hagenah, U., Bühren, K., Konrad, K., Schmidt, U., Schade-Brittinger, C., Timmesfeld, N., & Dempfle, A. (2014). Day-patient treatment after short inpatient care versus continued inpatient treatment in adolescents with anorexia nervosa. Lancet (London, England), 383(9924), 1222–1229. doi.org/10.1016/S0140-6736(13)62411-3

[lxvi] 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

[lxvii] anorexiafamily.com/autism-eating-disorder-tips and peacepathway.org

[lxviii] Weight suppression is just as much of a risk as a low BMI: anorexiafamily.com/weight-suppression-target-atypical-anorexia

[lxix] For the UK: Medical Emergencies in Eating Disorders (MEED), Royal College of Psychiatrist tinyurl.com/muv44e9u For the US, see the Academy for Eating Disorders guides: the one for Medical Care aedweb.org/publications/medical-care-standards and the one for Nutrition Treatment: tinyurl.com/4yk775z7

[lxx] 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 Also on my website: ‘Can hospital quip you for FBT? A parent’s inspirational account’: anorexiafamily.com/erc-denver-hospital-inpatient-residential-php-fbt

[lxxi] Links to papers on my site: NG tube feeding: parents’ questions: anorexiafamily.com/ng-tube-feeding-anorexia

[lxxii] anorexiafamily.com/autism-eating-disorder-tips and peacepathway.org

[lxxiii] anorexiafamily.com/erc-denver-hospital-inpatient-residential-php-fbt

[lxxiv] Risk assessment, physical examination and LOTS more on Medical Emergencies in Eating Disorders (MEED), Royal College of Psychiatrists, UK, for all ages: tinyurl.com/muv44e9u. For the US and worldwide: Academy for Eating Disorders Guide for Medical Management of eating disorders, aedweb.org/learn/publications/medical-care-standards

[lxxv] 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).

[lxxvi] 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).

[lxxvii] 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

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

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

[lxxx] anorexiafamily.com/psychotherapy-eating-disorders-insight-underlying-cause

[lxxxi] Dr Rebecka Peebles, 1:02:40 into this excellent talk: vimeo.com/50460378 From Medical Emergencies in Eating Disorders (MEED), Royal College of Psychiatrists, UK, for all ages: tinyurl.com/muv44e9u : ‘Where family members are important to the ongoing support of patients to be able to engage in and benefit from treatment, every effort should be made to persuade patients to allow appropriate communication so they can carry out this task’  

[lxxxii] 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)

[lxxxiii] Medical Emergencies in Eating Disorders (MEED), Royal College of Psychiatrists, UK, for all ages: tinyurl.com/muv44e9u
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

[lxxxiv] Insightful account from a 40-year-old: feast-ed.org/reflections-on-my-recovery-at-40-a-journey-with-my-parents

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

[lxxxvi] For the UK, good info from Medical Emergencies in Eating Disorders (MEED), Royal College of Psychiatrists for all ages: tinyurl.com/muv44e9u

[lxxxvii] 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.

[lxxxviii] 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).

[lxxxix] anorexiafamily.com/treatment-adult-anorexia-eating-disorder

[xc] See anorexiafamily.com for my workshops and my individual support

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

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

[xciii] Odet Beauvoisin, certified advanced practitioner of EFT www.eftkinesiology.co.uk She can treat by video call. 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.

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

[xcv] anorexiafamily.com/psychotherapy-eating-disorders-anorexia

[xcvi] anorexiafamily.com/post-traumatic-stress-disorder-ptsd


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:

Three routes out of post-traumatic stress disorder (PTSD)


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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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