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.
This is the whole of Chapter 12 of ‘Anorexia and other eating disorders – how to help your child eat well and be well’. I hope it helps you find excellent treatment fast!
Revised November 2017
The parent’s quest for good treatment
- The parent’s quest for good treatment
- Eating disorder treatments that are likely to cause harm
- Seek evidence-based treatment from specialists
- Principles validated by research
- Family therapies
- Family-Based Treatment (FBT)
- FBT is the first line of treatment for children and teens with anorexia
- FBT for anorexia in young children
- FBT-TAY for anorexia in young adults
- FBT for bulimia
- FBT in those ill for over three years: no evidence
- FBT doesn’t work for everybody
- What happens in Family-Based Treatment (FBT)?
- FBT therapists: who they are and how to find them
- Family therapy: variations on a theme
- Individual therapies
- How to identify effective treatment providers
- No good treatment locally?
- Family treatment the DIY way
- Coaching, home support and day treatment
- Hospitalisation and inpatient treatment
- Parents and clinicians in partnership
- When you’re excluded from your child’s therapy
- Therapy, coaching and emotional support for parents
In Chapter 4 I briefly outlined the essentials of treatment for an eating disorder. I want to go into more detail now, as we parents often spend a massive amount of energy searching for effective help. I will tell you about treatments that work, and what’s involved. First I want to acknowledge the situation many parents are as they search for good treatment.
Evaluating therapies, therapists, worrying about their methods – these can be greater stressors than the day-to-day work of looking after our kids.
For a while I was so frustrated with our family therapy sessions that I’d schedule support for myself right afterwards. We worry enormously about the expertise of the people we’re entrusting our child’s life to. Leaving one team to choose another is a major decision, fraught with uncertainties. It is nearly impossible to get any statistics on the treatment outcomes of a particular provider. You may get enthusiastic a treatment centre’s statements about the ‘many’ patients who achieved ‘positive outcomes’, but where are the numbers?.[i]
In the UK the health service doesn’t give us a choice of treatment providers. It’s a lottery whether or not your local team is experienced and up to date with the treatment of eating disorders. If you want to use a reputable service further afield (and it might just be a few miles away), you may face considerable barriers. Clinicians are human beings, and they can get defensive. Health authorities attend to their budgets. I know of families who couldn’t access local eating disorders expertise for a long time. In each case there was a gatekeeper who failed to diagnose an eating disorder, and parents who had to put up a tremendous fight to get a second opinion. If you’re in this type of situation, I recommend you use advisory bodies and all the contacts you have.[ii]
We can envy our US friends for having choice, but they face difficulties with medical insurance, and many accumulate large debts. And then there’s the problem of distance: all over the world, families are driving huge distances on a regular basis to access treatment or to visit an ill child in hospital.
There is the pressure of time. An eating disorder can suck kids down a spiral incredibly fast. Even when your kid isn’t at death’s door, every day that she restricts food represents ground to regain later and habits to retrain. Some youngsters have been ill for several years, and there is an urgency to treat them without any further delay to give them the best chance of recovery.
In my search for good treatment I had a particular source of pressure: every therapist my daughter saw reduced her tolerance for therapy. She hated any type of therapy where she was expected to sit and reveal anything about herself. I dreaded the day she’d point-blank refuse to try someone new, someone who I felt might be ‘the one’.
When anorexia is in control, you can expect your child to resist anybody offering treatment. If a child ‘hates’ a particular therapist, it might be because the therapist is doing a great job of requesting that food is eaten. On the other hand if you, the adult, feel uncomfortable about any treatment provider, it matters. We need to know that clinicians are competent, we need to be comfortable with them and trust them. I became effective when we got a specialist I really gelled with.
Counsellors, psychiatric nurses, general practitioners, and even psychiatrists, can unwittingly lead you down harmful routes if they are not highly knowledgeable about eating disorders and in particular, eating disorders in children and adolescents.
On a positive note you could already be with an excellent therapist but not yet realise it. It takes time to get to know each other. For the 11 months that my daughter was in hospital, I had no idea that some of the people sitting silently round the table at review meetings had expertise that would later help us make rapid progress. When my child returned to outpatient services I researched some private treatment options, unaware of how excellent our family therapist would turn out to be, unaware that we were getting access to the best in evidence-based treatment. I also now know that if we had been rich enough to opt for those private treatments, our ordeal would have lasted a lot longer.
Eating disorder treatments that are likely to cause harm
Before I tell you about treatments that have been shown to work, I will take a short detour and mention other approaches which, sadly, are still common. Even among therapists who are committed to evidence-based approaches, it’s natural for beliefs from the old models to occasionally leak through. My hope is that if you understand what’s going on you can seek solutions.
The sad legacy of psychoanalysis
Roughly speaking, the treatment models that were held in high regard in the 1970s were based on the premise that patients were fighting a smothering mother, and that (as mothers and nourishment are interwoven), rejecting food was an unconscious, symbolic and desperate attempt to break free of a pathological symbiosis. Psychoanalysis was the main show in town and the brain research and epidemiological studies available to us now didn’t exist. Psychoanalysts saw families in chaos over a child who wasn’t eating, and they confused cause and effect. They separated patients from their parents (parentectomy) and this was thought to support the sufferer’s battle for individuation. To the patients, it all made perfect sense, as their symptoms defined how they thought of themselves: ‘Choosing what I eat is my way of gaining some control over my life. My parents hate me.’
There are parallels with what’s happened with autism and schizophrenia. When these disorders were poorly understood, parent-blame filled the vacuum. Refrigerator mothers and sexual abuse were wheeled in to make sense of disorders that defied understanding.
Nowadays there are still many clinicians who are certain that the families they see are dysfunctional, who reckon the child will benefit from having a break from the family, who request that parents back off, and who curtail hospital visits. I frequently hear of clinicians who believe that parents have issues with anxiety, depression, control, over-attachment, under-attachment, avoidance, enmeshment. In short, they see us as harmful to our children. I wonder how often that happens to the parents of children with leukaemia.
Many psychotherapists still work from the premise that the illness serves an unconscious purpose and that if the patient can gain insight into what caused them to have an eating disorder, they will be free. The model is that patients are using denial as a protective mechanism. No research has been published to validate this type of intervention.
Clinicians have a genuine desire to treat and truly believe in their methods. Why wouldn’t they? The question is, what’s the evidence?’ Thomas Stic, 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.”[iii]
The tragedy of waiting for motivation
Some forms of treatment rest on the assumption that in order to eat, a person suffering from anorexia first needs to be motivated. This is a Catch 22 situation because not wanting to get better is part of the illness, so therapy can go on and on in an attempt to shift this conviction.
Some people with anorexia do have motivation. Perhaps not so much a motivation to eat, but a motivation to resume an interest, to attend a university course, to be able to have children. When children and adolescents, my impression is that motivation is a rare thing. They really believe they are doing what they have to do. So when you read of people who voluntarily took steps to beat their eating disorder, be aware they may have been in their early twenties upwards. After adolescence, people may benefit from more maturity and self-awareness; perhaps they have become weary of the illness and its effects and want to recover a normal life. They still need help. Self-responsibility can get them to sign up for treatment, but when dinnertime comes round, eating is so awful that all too often, any shred of motivation slinks off, whimpering.
Making it possible to treat children and adolescents without relying on motivation is one of the great strengths of approaches that make eating a treatment priority and that put parents in charge.
Tragically, when the only tool on offer is to build motivation, therapists and parents can resort to extremes when nothing seems to work. Watch out for the ‘reaching rock bottom’ principle.[iv] It may sound like ‘Let her experience the consequences of her choices, so she learns to take responsibility for herself.’ But it equates to this: ‘Let her not eat. Let her get really hungry and weak and feel awful. Let her mess up her studies and lose friends. Let her experience the consequences of her actions. When she’s reached rock bottom, she’ll finally see sense. Then she’ll want to get better.’
An example of this principle is the couple I met who’d let their underweight young adult go trekking in Africa. They knew she would probably return in a very poor state and hoped this would motivate her to re-engage in treatment. I hope their gamble paid off, and I also hope you have plenty of options before you resort to such desperate measures.
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 first try approaches that are far more likely to work.
Seek evidence-based treatment from specialists
All self-respecting treatment providers assert their commitment to evidence-based treatment. We parents need to spot whether that’s window-dressing or whether what they offer is truly grounded in current scientific research. Indeed there are many reasons why clinicians don’t naturally stick to the science.[v] One reason is human nature: most of us (therapists included) trust our opinions and suffer from an overconfidence bias. Then there is the time, expense and logistics involved in keeping up with the literature, going to conferences, training a whole load of staff in new approaches and providing them with quality supervision. So you can understand how so many treatment providers – including expensive private centres – keep doing what they’ve been doing for the last few years. Or, as eating-disorders researcher Glenn Waller quipped, ‘There’s a lot of evidence that evidence is better than opinion, but a lot of opinion that opinion is better than evidence.’
It’s not just individual therapists or treatment centres that miss out on the best available evidence from research. It takes time for a country’s health service or professional associations to review and update their recommendations. And so, official recommendations or standards may fail to prioritise the best treatments, and may advocate approaches which recent research has shown to be far less effective.
What makes a treatment ‘evidence-based’? The strongest evidence – the gold standard of research – comes from randomised controlled trials, in which patients are randomly allocated to receive either the new treatment or a control treatment. The control treatment may be a placebo, or it may be another well-established treatment. These trials are complicated and expensive to run, and given how eating disorders research is seriously under-funded, we only have a handful of those.
Evidence-based medicine is also made up of carefully evaluated results from other types of studies: from the strong evidence provided by meta-analyses and systematic reviews, to the weaker evidence provided by before-and after reports and case studies.
We have only a small amount of good quality research on treatments for eating disorders. I recommend a 2016 review by Glenn Waller of the effectiveness of different approaches, in particular if you’re caring for an adult.[vi] For adolescents, we have several randomised controlled studies showing that family-based treatment (FBT) works relatively well. We also have other studies indicating the value of other specialised forms of family therapy. From all this work, it is clear that family therapy should be the first line of treatment for adolescents.
The next question is, what kind of family therapy? Some argue that therapists should use the exact method used in the randomised controlled studies – the method described in the FBT manual. Others say that for all we know, other forms of family therapy are just as good or might even be better, and the main thing is to abide by the general principles of the approaches that have been researched. There’s also a view that the less experienced therapists are, the more they should stick to manuals.
This debate is not unique to eating disorders. Evidence-based treatments are usually set out in manuals or protocols, but therapists often want to deviate from them. If they use their clinical judgement and experience, and if their adaptions aim to suit individual patients’ needs and preferences, then what they’re doing is ‘evidence-based practice’. The idea is that one size does not fit all. On the other hand, when clinicians deviate from proven methods, there is a risk that they are unintentionally discarding ingredients that are crucial to the success of the method. Unintentionally, because unless we have a great number of ‘dismantling’ studies (and with eating disorders, we don’t) we cannot know for sure which ingredients matter and which don’t.
In spite of all the talk of evidence-based practice, it is still very hard to find therapists who are competent in family therapy for eating disorders, and some have a very poor opinion of it. Likewise, many therapists offer cognitive behavioural therapy (CBT) but few deliver specific forms developed and tested for eating disorders. Too often, our children are treated by mental health professionals who have not had specialist training in eating disorders. They mean well but they don’t know what they don’t know.[vii]
In June 2015, England created ambitious standards requiring its national health service to provide children and adolescents with specialist local eating disorders services competent in ‘specialised community family interventions’ and in ‘specifically adapted forms of CBT’ (more on these later). Meanwhile, most of Scotland is working towards each health board having a certified FBT therapist and a system of supervision. It is a huge challenge for a major region to organise high quality training and supervision, and I invite policy-makers in other countries to learn from the experience.[viii]
Principles validated by research
The successes of family therapy and of specifically adapted forms of cognitive behavioural therapy (CBT) show that whatever the age and the type of eating disorder, regular meals, weight recovery and cessation of bingeing or purging behaviours are key. For anorexia in adolescents, research uncovers the following principles:
- Anorexia should not be treated as a choice patients make consciously or unconsciously.
- There is no requirement for the child to have motivation to eat or to beat the illness, and there is no requirement for the child to have psychological insight.
- Families should be treated as a resource, not a cause or a problem.
- The best results come from parents being empowered to feed their children and normalise their child’s eating and weight, at home.
- Exposure to food and overcoming fears may be part of how the treatment works.
Some therapists use slightly different approaches that fulfil all the criteria I’ve listed above. For all we know, these variations on a theme might be more effective. This book you’re reading now is not pure FBT. When my daughter was treated by an eating disorders specialist recently trained in FBT, we benefited from the method’s principles, but we did not follow the manual to the letter.
The difficulty is that we don’t have the data to be sure which details of the method matter and which don’t.
Imagine a top leukaemia specialist telling a parent that in her experience, you get better results using a slightly different dosage. No research has been done to prove it, but it’s not terribly different from the standard protocol, and it does offer hope of a swifter recovery. That’s a bit like some of the methods out there that are not family therapy but that are still based on sound knowledge of the illness and of the research.
The FBT method has been validated as a package but dismantling studies are ongoing to tease out the elements that make it successful. Some of those uncovered so far are: parents take control, parents are united, and parents are non-blaming.[ix]
Throughout this book, when I talk of family therapy, I mean a form of eating-disorder treatment where parents are a resource, not a problem. Most of the research conducted to date is on a specific form of family therapy: Family-Based Treatment (FBT).
Family therapy at the Maudsley Hospital
In the 1980s, after decades of treatment that separated children from their parents, Christopher Dare, Ivan Eisler, Gerald Russel and others at the Maudsley hospital in south London developed a new type of family therapy specifically for adolescents with anorexia. They made the bold decision that because there was no evidence that parents were harmful, they would use them as a resource in the treatment of their children. They produced the first empirical studies to support family treatment for adolescents with anorexia.
The Maudsley Child and Adolescent Eating Disorders Service continues to be a centre of expertise: paediatricians or child and adolescent mental health (CAMHS) units anywhere in the UK can refer a child to the service for a second opinion or for treatment.[x] For patients who need more than the outpatient service, they offer a day care programme, and also work closely with the inpatient unit at King’s College hospital.[xi]
The treatment (named family therapy for anorexia nervosa, or systemic family therapy for anorexia, or FT-AN) has evolved under the leadership of Ivan Eisler and Mima Simic. Multi-family therapy (MFT) is now a major component.[xii] Families share strategies that help their child to eat, there are joint family meals supported by therapists, and explorations of the effect of the eating disorder on family life. The team have trained professionals in family therapy and MFT worldwide, and there is currently a program of training for eating disorders therapists within CAMHS in England and Wales.[xiii]
The origins of Family-Based Treatment (FBT)
Daniel Le Grange, who participated in the early family therapy studies at the Maudsley Hospital, teamed up with James Lock and others in the US to conduct further randomised controlled trials on the approach. They named it Family-Based Treatment (FBT) (or FBT-AN and FBT-BN for the anorexia and bulimia versions) and many call it the Maudsley method or Manualised Maudsley or Maudsley-FBT). To ensure the study’s therapists were consistent, they created a manual[xiv] (and later wrote a parent’s guide: Help Your Teenager Beat an Eating Disorder[xv]).
Nowadays there are differences between FBT and the family therapy used and taught by the Maudsley hospital. And around the world, people are developing variations on the family therapy theme while continuing to use parents as a resource in their child’s treatment.[xvi] In the absence of studies to tell us if differences matter, we can only hope that they’re small enough that whatever variant you get, you’re in good hands.
The New Maudsley Method: not the same as the Maudsley Approach
Now be ready to be seriously confused.[xvii] A significantly different approach came out in 2007 via the book Skills-Based Learning for Caring for a Loved One with an Eating Disorder: the New Maudsley Method.[xviii] To avoid confusion some refer to it as ‘the skills-based method’ (or even ‘the dolphin book’) rather than ‘New Maudsley’. It comes from Janet Treasure and her King’s College London team in Guy’s Hospital and in the adult (not the children and adolescents’) service at the Maudsley Hospital. It is intended to be used in conjunction with treatment, rather than being a treatment in its own right. Its focus is on helping staff or parents to support a person, and the team’s research indicates that caregivers cope better after learning the skills. It was devised for patients with severe and enduring eating disorders (SEED), mostly adults who may have been in and out of treatment for five or more years, though plenty of parents also use parts of it with their adolescents (and many of the communication principles are like those in this book).
Whereas Family-Based Treatment for adolescents with anorexia asks parents to take charge, New Maudsley’s ethos is one of collaboration with the patient. Parents try to be a gentle, dolphin-like guide who nudges their loved one in the desired direction. They strive not to act in ways that are ‘accommodating’ or ‘enabling’ of their child’s eating-disorder behaviours. Patients are thought to have within themselves the resources to change and with the use of a ‘motivational interviewing’ you hope to move them along a ‘readiness scale’.
So New Maudsley is not Maudsley-FBT, but there are some similarities: eating is not optional, parents are part of the treatment, and patients are treated with compassion.
Family therapy that is not designed for eating disorders
The family therapy for eating disorders, which I advocate, has very little in common with general family therapy (such as systemic family therapy), where there may be an assumption that the cause of the problem, and the fix, is in the way members relate to each other. There can be parent-blaming. A really old-school family therapist may even look for how having a child with eating problems serves to distract us parents from our own issues. Meanwhile your child may lose weight, purge and over-exercise.[xix] If you’re offered family therapy that is not specifically for eating disorders and that is not based on the Maudsley/FBT model, read on.
Systemic family therapy versus FBT
Having just warned you that systemic family therapy might be an unpleasant waste of time, I need to tell you it may actually be just as effective as FBT, according to a randomised controlled trial.[xx] Let’s be clear: in the trial, the systemic family therapy took a ‘non-pathologising, positive view of the family system, and the current difficulties they are struggling with’ and recognised that ‘the family themselves will be in the best position to generate suitable solutions’. If your family therapy service doesn’t truly believe this, then the results of the trial are not relevant to you.
So how does the study’s systemic family therapy differ from FBT? Well, there is ‘no specific emphasis on normalisation of eating or weight, although if the family raises this issue, the therapist will help them address it.’ I imagine most families would be extremely concerned about the adolescent’s eating and weight, and therefore there may be quite a lot of crossover between the two approaches.
The results? Systemic family therapy is equally effective to FBT in weight restoration and reducing eating disorder symptoms at the end of treatment and at one-year follow-up. FBT leads to faster initial weight gain and significantly fewer days in hospital (policy-makers should note this cuts the cost of treatment by half), while systemic family therapy is more effective with patients with strong obsessive-compulsive symptoms.[xxi]
Family-Based Treatment (FBT)
Since family therapy has been subjected to the greatest number of studies, including randomised controlled trials, and since it’s the approach I have the most personal experience of, I want to tell you a little more about it now. I’ll begin with some data from the trials.
FBT is the first line of treatment for children and teens with anorexia
[Update November 2017: I explain here how FBT has to be the first line of treatment for anorexia and for bulimia in England (for under 18s), according to the NICE guideline. England’s NICE guideline matters worldwide becomes it comes from a review of worldwide evidence, and it’s the most recent such review. ]
Before family therapy came along, there was no scientific evidence that anything worked particularly well.[xxii] Lock, Le Grange and others nailed down a protocol (a detailed manual) for family therapy, called it Family-Based Treatment (FBT) and set out to see how it compared with individual therapy, using a randomised controlled trial.
The control treatment in the main FBT study was a promising individual therapy programme (‘adolescent focused individual therapy’) which encouraged practical changes as well as dealing with emotions.
The patients in the study were 12- to 18-year-olds treated within three years of being diagnosed with anorexia. The outcome was that FBT was superior to the individual therapy programme.[xxiii] It shows that youngsters can be treated most effectively when parents take charge and when the treatment doesn’t rest on patients’ motivation to get well.
What success rates can you expect from FBT for anorexia (whether restrictive or binge-purge type)?
The figure for full recovery (full remission) is around 40 per cent at the end of treatment (10 to 20 sessions). For partial or full remission, the figure is 89 per cent.
The results last. One year after end of treatment, the figure for full remission grows to 50 per cent. Four or five years after the end of treatment, 80–85 per cent of patients are pretty well or very well.
What these results also tell us is that FBT works poorly or not at all for around 20 per cent of adolescents.
FBT for anorexia in young children
FBT seems to be our best bet for young children, who generally have little capacity for the introspection required of talking therapies, and where it is natural for parents to be in charge.[xxiv]
FBT-TAY for anorexia in young adults
A variant of FBT, called FBT-TAY is showing promise for 17 to 25-year olds (‘transition-age youth’ or TAY) suffering from anorexia. It involves more teamwork, more buy-in from the young adult, and less of parents taking charge. All the same, parents are expected to make a commitment to help their child gain weight and normalise eating.[xxv]
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.[xxvi]
[Update November 2017: for bulimia, FBT must be the first-line treatment according to the NICE guideline – I explain it all here.]
FBT in those ill for over three years: no evidence
FBT trials relate to patients treated within three years of diagnosis. If your child or young adult has been ill for much longer, there is no scientific evidence to back up the used of FBT. (‘No evidence’, in this case, means ‘it’s not been studied, so we don’t know’. Confusingly, sometimes ‘no evidence for X’ means ‘trials have shown X doesn’t work/isn’t true’). But I know of parents who have successfully used it all the same.
“Our D is now over 21 and was first diagnosed at 16. Three and a half years ago, she had a big relapse. Prior to that treatment was not really coordinated and we had no Maudsley Family-Based Treatment. Since we found our special educator and her Maudsley Approach we have steadily travelled the journey to recovery and still find the Maudsley Approach very valid for an adult child.”
FBT doesn’t work for everybody
Few things in the medical world work for 100 per cent of patients. If FBT 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.
Later in this chapter, I’ll suggest how you might go about evaluating alternatives.
What happens in Family-Based Treatment (FBT)?
I’ve already outlined important principles of FBT. It’s an outpatient treatment lasting 6–12 months (20 to 40 sessions). The treatment manual recommends that the therapy team members consist of one lead clinician and a co-therapist. These may be child and adolescent psychiatrists, or psychologists or social workers. They would normally have the support of a consulting team that might consist of a paediatrician, a nurse, and a nutritionist. The main treatment providers are the parents, who are the experts on their child and provide meals and loving support at home.
When you first visit an FBT therapist with your child, the focus will be on weight restoration (Phase I). You take control of your child’s meals and prevent excessive exercise, bingeing or purging. The therapist ensures you and your spouse are consistent in your commitment to helping your child to eat, and clarifies the role of siblings, offering them support as well. After about ten weekly sessions, if the child is close to a healthy weight and meals are relatively stress free, Phase II begins.[xxvii] This is a time when an age-appropriate level of control is gradually handed back to the young person. Sessions may become less frequent – the manual allocates five sessions for this phase. Finally, Phase III (three sessions or so) is about return to normal family relationships, addressing the young person’s life beyond food issues, and planning for the future.[xxviii]
This probably sounds impossibly neat and tidy, but it has to be so when you’re conducting randomised controlled trials. You must control your variables. My understanding is that for many families in treatment now, phases blend in and out of each other, and there is flexibility to meet the needs of each situation.
FBT therapists: who they are and how to find them
Certified FBT therapists have been trained by Lock and Le Grange’s team and are listed on the FBT training website.[xxx]
If your therapists aren’t on the list of certified therapists but say they’re doing FBT, there may be a perfectly valid reason. They may be part way through training and supervision (as ours was), or part of a team in which key people are FBT-qualified. They may be experienced eating disorders therapists who have attended a day or two of training from James Lock or Daniel Le Grange. This is now the case for all child and adolescent mental health services in Scotland.
A therapist may have taught themselves FBT from the manual, avoiding the considerable travelling, training and certification costs.
If your therapist is self-taught or has only had a couple of days of training, have your antennae out for any outdated models leaking out and polluting the waters. It can take time and care for therapists to let go of the models they’ve used throughout their careers. Even after a year of training and weekly supervision, on average they do not show more than a moderate level of fidelity to the approach.[xxxi] This is uncomfortable news for most of us around the world, and James Lock and his team in Stanford are working on improving dissemination.
“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.”
Family therapy: variations on a theme
Earlier I outlined what makes ‘evidence-based practice’, and how there is some debate around whether patients are well served when therapists deviate from a validated approach. Some parents in the US say they’re getting ‘Modified Maudsley’, in other words, a variant of FBT. They may or may not have a qualified FBT therapist, but the key point is that they’re deviating in some way from the FBT manual – a manual which was the basis of randomised controlled trials. The deviation may be small or it may be so large that the approach hardly has anything to do with FBT any more. It may work better or not as well as FBT, but without studies, we just don’t know.
As an analogy, imagine you are following a recipe to make a cake. Because your oven door doesn’t close well, you lengthen the cooking time. So far so good – that’s a sound judgement based on your experience. And if you don’t like vanilla, you also know there’s no harm in leaving that out. Now imagine you are the creative type, so you leave out quite a few ingredients and add a few new ones. If your cake ends up like a lump of rock you won’t know why, unless you go back to the recipe and systematically remove or add ingredients one at a time.
Your therapist might be lacking training or rigour if he changes the recipe. Or he may have excellent reasons to adapt it to your child, and when therapists do this and write up the research, the field keeps moving forward. Our own therapist told us early on that because of the stage we were at, she wasn’t applying FBT by the book but using the main principles. One very obvious modification she made was that like previous clinicians, she weighed my daughter (eleven years old at the time) blind. This worked for us, and as I look back I appreciate how sensitively she responded to our needs as they came up.
To keep abreast of some of the variations, read Family therapy for adolescent eating and weight disorders edited by Loeb, Le Grange and Lock.[xxxii]
Cognitive behavioural therapy (CBT) adapted for eating disorders
[Update November 2017: for anorexia and for bulimia in under 18s, FBT must be the first-line treatment according to the NICE guideline. If FBT turns out to be ‘unacceptable, contraindicated or ineffective’ then CBT is one of the permitted alternatives – I explain it all here.]
Cognitive behavioural therapy (CBT) is a widely available treatment for depression or anxiety. Many therapists list it as one of their approaches to treating eating disorders, and it is essential that you satisfy yourself that they’re not offering general CBT, but are trained[xxxiii] in evidence-based CBT for eating disorders – in other words, CBT that is specially adapted and tested for eating disorders. This takes into account the physiology of eating and starvation and focuses on modifying behaviours and obtaining physiological change, rather than talking about change.
From here on, when I talk of CBT, I will be referring to one of these evidence-based forms.
CBT requires the individual to have some degree of motivation, and to be capable of engaging with some level of rational thinking. It’s most effective as one-to-one therapy but can also be delivered via self-help and in groups. It has been well researched on adults with bulimia and binge-eating disorder, and to a lesser extent, on adults with anorexia, and works better than other individual therapies[xxxiv]. In the UK, clinical guidelines use the words ‘should be used’ or ‘may be used’ in relation to this treatment, depending on the type of eating disorder and whether the patient is an adult or an adolescent.[xxxv] According to Christopher Fairburn, who developed CBT ‘enhanced’ for eating disorders (CBT-E), ‘two-thirds of adult patients who complete treatment make an excellent response’, though the ‘outcome is less good’ in adults with a BMI under 17.5.[xxxvi] CBT-E has been designed for adults with a BMI between 15 and 40.
The method has been extended to older adolescents and has been tested on a small number of adolescent patients with anorexia. The outcome of the 40-session programme was positive for two-thirds of them, though only one-third of participants reached a weight close to their ideal body weight.[xxxvii]
There is only one randomised controlled study comparing FBT with CBT, and that is for adolescents with bulimia. Both produce similar outcomes 12 months post-treatment but FBT produces improvements sooner.[xxxviii]
Glenn Waller, co-author of a CBT treatment guide for therapists, writes in a review of therapies[xxxix] that for children and adolescents
“CBT should be considered as an alternative that can be used only where FBT is not possible or indicated or where FBT has failed to be effective.”
Christopher Fairburn, author of a CBT-E manual for therapists, indicates that CBT-E may not be suitable for those below the age of 15 and is rarely appropriate for children under 14 years old.
The CBT-E manual indicates a number of criteria that rule out the approach. If your youngster has lost a lot of weight (more than 20 per cent or so), or presents a health risk or a suicide risk, or has co-existing psychiatric problems, or refuses to engage in individual treatment, you cannot use CBT-E outpatient treatment right away. You need a preliminary intervention such as family therapy. If your child has clinical depression as well as an eating disorder, the therapist might want that to be treated first.
CBT requires engagement from patients. They have to keep an ongoing record of their eating or purging behaviours, they must be willing to talk and they must be able to use rational thought to take in information, to recognise the downsides of the illness, and to gain the motivation to experiment with new behaviours.
If there are no major obstacles to your child having CBT and if you’ve already considered family therapy, CBT might be of interest for a number of reasons. It might help your child deal with any eating disorder beliefs or habits that haven’t successfully been addressed in family therapy. It might help him learn more about relapse prevention and take responsibility for maintaining behaviours that will keep him safe. CBT is also an option when parents find themselves unable or unwilling to give their child the level of support, supervision and uncritical acceptance that family therapy requires.
If you’re considering CBT I recommend you first read the books written for therapists. The differences between authors will alert you to points you may want to discuss with a potential therapist.[xl] What follows is my summary of the main aspects of CBT treatment. As you will see, CBT shares some principles with family therapy and with approaches I describe in this book, but there are large differences.
CBT therapists care very much about engagement with patients and nurturing their motivation for change. In his CBT-E manual, Fairburn suggests that a younger patient’s refusal to engage in treatment may be a way of asserting identity and independence and that girls may turn to controlling their eating, shape and weight as a way of boosting their self-esteem and enhancing peer approval. (I’m guessing these interpretations would make my daughter rather cross. I note that Glenn Waller’s book does not go down this road. It’s an example of how you can sound out therapists in order to find the best match for your child.) Young people, according to Fairburn, need to develop autonomy and will be helped to make choices and take appropriate control. With all this in mind, Fairburn wants therapists to be clear that they work exclusively on the youngster’s behalf and not on behalf of the parents. Parents are involved at the outset and there are regular joint meetings, but the bulk of the CBT-E therapy is between the young person and the therapist. On the other hand, Waller gives examples of greater parent involvement and an intelligent approach to confidentiality. He emphasises that a therapist only spends an hour a week with a patient, and that the real therapy happens in the young person’s real world, where they are part of a family and benefit from their parents’ support.
CBT treats disorders as ‘cognitive disorders’ (i.e. disorders related to how we think, perceive, remember, judge or learn). It focuses on the behaviours that maintain the disorder in the present rather than look for causes, though it may look at the past to help the person avoid sliding back into a problem once they have recovered. The theory is that all eating disorders share a core psychopathology: the over-evaluation of shape and weight and their control. Therapists help patients understand the factors that maintain their eating disorder, such as over-evaluating their shape and weight, calorie-counting and following strict dietary rules, being underweight, and reacting in certain ways to events and emotions.
The patient must self-monitor throughout the day by noting their behaviour around food, purging, body-checking, their mood and any triggering event. In sessions, patients get to see the mechanisms that maintain the eating disorder, they become conscious of the effect the eating disorder has on their life, and the therapist works on their motivation to make steps towards recovery. There is work to do on interpretations (what you see in the mirror, for instance, is not you; when you ‘feel’ fat, it does not mean you are fat) and there are instructions to follow each week (for example, no more eating between meals; no more weighing at home).
The process is collaborative. For instance, with underweight patients, the decision to regain weight will come from them rather than be imposed by the therapist. Yet there is also a clear structure for each session, and the CBT-E manual specifies one essential requirement right from the start: patients must eat five to six times a day.
Regular eating helps underweight patients regain weight, of course, but it also helps avoid binges and this, in turn helps put a stop to purging.
Patients are weighed at each session and educated about normal weight fluctuations. If they are obese, the agreement is usually to treat the eating disorder first, then consider tackling their weight. If they are underweight, then with CBT-E they have a standard BMI or weight-for-height bracket to aim for or to maintain. Weight regain, if it is needed, is a priority and is top of the agenda at each session.
In the CBT-E manual, healthy exercise is encouraged even in underweight patients on the basis of its psychological and physical benefits.
For people who are not significantly underweight, treatment consists of around 20 outpatient sessions over 20 weeks. For non-underweight people there is also evidence in favour of a 10-session intensive version (CBT-I).[xli] For those who are very underweight (adults with a BMI of 15 to 17.5), CBT normally requires 40 outpatient sessions over 40 weeks. The additional sessions address weight restoration as well as the problem that patients may have little motivation to change.
Towards the end of treatment, people will not have fully recovered but their thinking and behaviours will have normalised and the risk of relapse will be low. The therapist and patient draw up a maintenance plan and a plan for dealing with setbacks. The person is by then able to be their own therapist, and may involve their family as co-therapists. Once treatment ends, the person is expected to continue maintaining progress. There is a review session 20 weeks or so after the end of treatment to assess any further needs.
CBT can take place in conjunction with inpatient treatment if patients are unable to make necessary changes to their eating or purging without intensive support.
Adolescent focused individual therapy (AFT)
Another validated one-to-one therapy that requires patients to take charge of their own recovery is adolescent focused individual therapy (AFT).
[Update November 2017:
Note that in England this therapy is named adolescent-focused psychotherapy for anorexia nervosa (AFP-AN).
In short AFT is about half as effective as family-based treatment. The most up to date expert review on treatments for eating disorder, the NICE guideline, recommends AFT and CBT for under 18s only when FBT is “unacceptable, contraindicated or ineffective”]
From the main study comparing AFT and FBT: ‘AFT remains an important alternative treatment for families that would prefer a largely individual treatment.’ [xlii]
Interpersonal therapy (IPT)
I want to mention interpersonal therapy, a form of psychodynamic therapy (rooted in psychoanalysis). As there has been some research to validate it, it is often listed alongside CBT in national guidelines for the treatment of eating disorders in adults. The idea is to help a patient understand how symptoms of the eating disorder might be connected to difficulties in their relationships, and to work out strategies for change. It requires the patient’s engagement.[xliii] I am not familiar with its possible use in children or adolescents. For adults, please note that recent research makes CBT a better bet.[xliv]
Other individual therapies: use caution
If your child is offered individual therapy, find out what the intention is. When our mental health service insisted that my daughter attend weekly one-to-one talking sessions with a psychiatrist, the intention was vague, and the therapeutic approach even vaguer. The result? Extra misery and tension for a little girl who already had quite enough to cope with. It made no difference that the psychiatrist was kind and caring.
In the FBT model, psychotherapy isn’t normally required, or if it is it comes much later. Many problems (anxiety, depression, OCD) disappear with nutrition and time, provided they weren’t on the scene before anorexia came along. On the other hand, psychotherapy (or medication) may help your child get ‘unstuck’ if depression, anxiety or OCD was a pre-existing condition and is getting in the way of a steady recovery from anorexia.
There may be other good reasons for your child to have psychotherapy, possibly as an adjunct to the main treatment. A therapist may introduce evidence-based tools for distress tolerance and emotion regulation. When this is done with the family, parents can support the use of the tools in real-life situations.[xlv]
All approaches need to be compatible with each other, with therapists sharing the same ethos and preferably working as a team.
Many psychotherapists have been trained to think it is very wrong to include parents in sessions, so you will only get general information about how things are going. I’ll come back to this later in this chapter.
Why would your child engage with therapy?
Wouldn’t it be wonderful if a therapist could talk our youngster out of their problems? By now you’ve probably realised that’s unlikely to happen. The Royal College of Psychiatrists in the UK writes:
“It is not psychological therapy that will turn the course at this point, but […] skilled nutritional rehabilitation.”[xlvi]
Most people with anorexia have some degree of anosognosia, a brain condition that makes the person unable to perceive that they are ill and need help, or unable to perceive the severity of their situation. So you can drag a kid to a psychotherapist, but he’ll make his view quite clear that he doesn’t need or want to be there.
It also seems that even without an eating disorder, most children and adolescents won’t open up to psychotherapists. Youngsters are intensely private and they fear they will be judged. The people they really trust to hear them, to give them unconditional acceptance and comfort are usually their parents.
To say that a youngster may not engage with psychotherapy can be an understatement. So often they blank the therapist out, they’re rude, they have to be dragged into the session and they run away. Whatever your child is doing, it’s probably normal, and for all we know, is a sign of great sanity.
If in doubt, use this reality check: are therapy sessions making your child eat more? If the answer is no, why bother?
For a related article on therapy for your child: 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, you may be wondering how to choose a therapist, clinic or hospital. If you’re in the UK the question may pose itself differently: how satisfied are you with the treatment your child is getting, and would less harm be done by walking away from it? Our National Health Service (NHS) currently has huge variations in the standard of treatment for eating disorders, and the same applies to private treatment centres.
First of all, you should be able to identify the treatment providers that are unlikely to be effective. For instance, the world is full of adolescent treatment centres that use some form of psychotherapy – often some general (non-specialised) CBT or psychodynamic therapy – while family therapy is presented as a low-key add-on (if it’s offered at all). Any service that isn’t putting specialised family therapy top of their list is only paying lip service to evidence-based treatment.
Some treatment centres have beautiful photography on their websites, but the words are a complete turn-off. For instance:
- ‘We offer family therapy to improve the way family members relate to each other, resolve conflicts and communicate’. That sounds like ‘fixing’ the family, and has nothing to do with family therapy evidence-based for eating disorders.
- ‘Your child will receive intensive psychological and emotional support in order to understand underlying factors that have contributed to her eating disorder.’ Understanding (or more likely, speculating) doesn’t constitute treatment.
- ‘Your child will gain a deeper understanding of herself and insight into the root causes of her eating disorder.’ Ditto
- ‘Eating disorders are symptoms of deep, unresolved issues. You will learn how to confront these issues and the emotions they produce, and your relationship with food will stabilise.’ So it might be a while before the starving youngster gets to eat. Notice the complete absence of neurobiology.
- ‘All meals are eaten in a family atmosphere with our highly trained staff’. Parents, clearly, don’t get a seat at the table.
- ‘… blank …’ Nowhere does the website mention eating or weight gain.
- ‘Parents may visit their child between 2 and 3pm on Sundays. Visitation privileges will be withdrawn if the child has not gained the expected daily rate.’ Yes, this still exists. The last parents I talked to who went along with this eventually had to pull their child out (a tender eleven-year-old), as there was no progress.
A checklist to assess a treatment provider
If I was looking for treatment with the knowledge I have now, I would be forming a picture of their competence from questions like these:
- Their level of expertise, their qualifications, who they’ve trained with, in which approaches, to what level, where do they get their supervision and ongoing training, are they members of eating disorders associations, and have been involved in any published research.
- How many eating-disorder patients they have treated recently and what were the outcomes (a tricky one, as very few clinicians collect or publish any data on their patients’ recovery rates).
- What other parents say about them (I would ask on an online parents’ forum).
- I would trust my gut. If communications with the therapist gave me a sense of being bossed around, hurried, judged, excluded, not listened to or not respected, then I would not trust that this person had the qualities my child or myself need. On the other hand, I wouldn’t let a warm, compassionate exchange distract me from the other, more scientific requirements.
Here’s another indicator, based on a true story. You phone a private therapist, a specialist in an expensive eating disorder clinic, saying you need an assessment and advice on what to do about your child. You explain she’s losing over a half a kilo per week, she has cut out all carbohydrates and exercises several hours a day. The therapist gives you an appointment … for four weeks later. Competence level? In the minus range, wouldn’t you agree?
If I was choosing a therapist for my child I would want to suss them out before taking the risk of bringing my child along. This is because I don’t want my child to hear anything harmful, and I also don’t want my child to develop an intolerance to therapists.
The following would be on my checklist (further on I offer additional pointers relevant to inpatient units).[xlvii]
- I wouldn’t entrust my child to a therapist who treats eating disorders as if they were a psychological defence mechanism or a lifestyle choice, and who is not aware of the complex mix of genetic, neurobiological and environmental factors.
- I’d want feeding and weight/nutritional recovery to be their treatment priority.
- I’d want them to educate parents about eating disorders, give coaching on how to deal with mealtimes at home, on how to deal with emotional outbursts and how to nurture relationships. I’d want them to support and empower parents. I’d love sessions purely for parents (individually and in groups), for emotional support, for education and to empower parents to plan the next steps.
- I’d want to know about their methods and how long treatment usually takes.
- I’d want to see uncritical acceptance of parents and of children. No blame and plenty of kindness. I’d never want my kid scolded or shamed about behaviours driven by the eating disorder.
- I’d be very cautious if they offered talking therapy to my kid while she’s malnourished. I’d want to understand the objectives.
- I’d want members of the treatment team to all have the same treatment model (‘all on the same page’) and to have training, qualifications, supervision and support in the methods they’re using.
- I’d want them to be passionate, highly specialised and experienced experts. But I’d also be OK with passionate learners, i.e. those reading scientific papers, attending conferences, getting coaching, supervision or peer-to-peer support, because I know some these therapists do excellent work.
- I’d run a mile if parents were kept at arm’s length or told to back off and if there was any danger of triangulation between us, our kid and the therapist. If my kid was in on the meeting, I’d scoop her up and sprint before she heard things that would set us back for weeks.
- I’d make a hasty retreat if the treatment required my child to have the motivation to eat or to be well, or if it focused on building motivation.
- I would want clinicians who can see my whole child – her interests, her desires, her humanity.
- I’d want them to answer my questions willingly and not get all huffy and defensive.
If I could get most of what I’d like from this list, I would breathe a massive sigh of relief, knowing I’m going to be well supported and that my child is likely to be in good hands. Yet not all clinicians make it easy to ask questions. It can be hard to keep our nerve when strangers in a position of authority answer evasively or haven’t scheduled enough time. Sometimes we’re scared of alienating them because they’re our only hope. And sometimes we make do with less than perfect treatment because some help is better than no help.
I highly recommend you read Dr Sarah Ravin’s short blog: ‘Red flags: how to spot ineffective eating disorder treatment’ before you go on your first visit.[xlviii] It will also help you work out whether to stay with a clinician you’re not sure about.
Some private treatment providers make a feature of how they themselves recovered from an eating disorder. It’s not uncommon for eating-disorder workers to have personal experience of it. Does it make a difference? It depends on how they’ve dealt with it and if any current issues are leaking out. If they’re not colluding with the illness and if they’re not evangelical about a single approach to which they attribute their own recovery, then I can’t see a problem. Conversely I don’t think their experience is a great asset (unless it has contributed to their general humanity). There’s no need for the podiatrist who treats my mum’s feet to have ever had foot problems of her own.
Does the clinician’s own body shape matter? All I know is that my daughter had a number of experts caring for her who looked significantly overweight and she didn’t seem to question their competence or trustworthiness. One of my daughter’s favourite, most motherly nurses had a generous, cushiony body specially designed for hugging, something that gave us both great delight. I never heard anyone on the team make careless remarks about their own eating habits or shape, the way women commonly do. I never heard mixed messages.
Clinicians rich in human qualities
My daughter got meaningful support from a variety of nurses and specialists, irrespective of their training. One of her therapists had a psychoanalytical background, which to me might normally be a turn-off. Yet I cannot think of anyone I would want more in times of need: she could make a desiccated twig flourish, such is the power of her empathic manner and the quiet wisdom she embodies.
There was also the nurse on the ward whose hugs were pure therapy. I remember weeping with gratitude when she promised to comfort my little girl on one particularly awful night. And then there was the youngest of all those nurses, who was one of the wisest, kindest, most empathic people I’ve met, yet she was unqualified and no more than 25 years old.
It’s no coincidence, I’m sure, that the staff who were wonderful to my husband and me were also the ones my daughter loved the most. Their humanity lit up everything in their path. I believe that their life-affirming influence lives on within my daughter now. It certainly does with me.
No good treatment locally?
If you can’t find a good therapist locally, there are other options. Some parents travel huge distances for a few days of intensive learning and family therapy.[xlix] On my website I list the certified FBT therapists who can provide treatment via video conference (Skype).[l] If you’re in the UK your GP may acknowledge that treatment isn’t meeting your needs and they may release funds for treatment elsewhere, either at an NHS centre of excellence or a private clinic.[li] If this happens, make sure you’re not going from the frying pan into the fire. Do your research.
Finally, some parents bravely go it alone.
Family treatment the DIY way
If going it alone seems daunting, be aware that you are in good company. You may benefit from reading about the experiences of people who have done this, such as Laura Collins, author of Eating with Your Anorexic, who was a pioneer in this domain and remains a dedicated, super-informed activist.[lii] Harriet Brown describes feeding her daughter at home in her book Brave Girl Eating[liii] and you may also enjoy her article about assembling a support team.[liv]
If you’re at the stage of even considering this move, I’m guessing you’re already extremely well informed and very determined. At the same time, you’re going to need support. At the very least, you’ll need a doctor on board to monitor your child’s health. In the UK we can choose our GP, so switch if you’re not happy with the one you have. You need someone who’s either well educated in eating disorders or who’s willing to learn.
You’re also bound to have all kinds of practical questions: should you let your child choose her flavour of yoghurt? Should you weigh her? Should you let her go for a sleepover? Remember that you can benefit from the experience of other therapists and other parents from all over the world through the internet. The Around the Dinner Table forum, for instance, is a precious resource for many parents.
Coaching, home support and day treatment
Some children need a trusted adult with them at all times to prevent bingeing, purging, self-harming or suicide. This task can fall on one parent, who may become starved of sleep, company and stimulation. Parents need support for the extraordinary work they are doing. They rarely get it.
When we can’t manage to feed our child at home, most of us have only one option: hospitalisation. In my daughter’s case, 11 months of it.
In the US, it’s common for eating-disorders units to offer a continuum of care: outpatient (OP), intensive outpatient (IOP), day treatment, partial hospitalisation (PHP) and inpatient (IP) or residential. I know many parents in the UK who would dearly love this range of options, or at least something in between caring 24/7 for their child and inpatient admission.
Everything hinges on whether we can feed our children safely at home. In Family-Based Treatment (FBT), the second session is a family meal in the therapist’s office. Some family therapists choose not to do this – and they give compelling reasons for their decision – yet I appreciate the opportunity for parents to gain confidence and pick up some tools to begin feeding their child. Shortly after my daughter was diagnosed, an office meal was scheduled on a day I had a work commitment. I have no idea if the whole of the following year would have been different had I attended. It never occurred to me to ask for another chance.
In the weekly sessions of the refeeding phase of FBT, there is normally a lot of attention given to how meals went, who said what, what helped and what didn’t. The intention is to give families tools to use once at home. In our case this wasn’t hands-on enough to help.
We would be able to care for our children at home so much better if outpatient services offered more home support. What we need, what we yearn for, is an experienced person to sit with us for a few meals to observe us and coach us. Sometimes we just need to break a deadlock, to get one success. If we still can’t get our child to eat, we want an expert to come in and help us get our child to eat. And we need this expert to be an expert in eating disorders, someone who is part of the team, not a general health worker who doesn’t understand eating disorders.
We asked for coaching at the start of our daughter’s illness, then again at regular intervals. Eventually the eating disorders unit offered to come and support us over a few meals. After four lunches we’d learned everything we’d been trying to learn during 11 months of hospitalisation and countless family therapy sessions. Those four sessions gave me a big chunk of what’s in this book.
Health service managers, take note: I reckon that those visits cost the service a total of six hours. Six hours, versus thousands of hours of therapy and nursing care.
If I were king, every family hit by an eating disorder would receive coaching and support at home.
Home support and day care are available in some countries, some regions, and not in others. Ask, and when you get a no, don’t give up. Ask other agencies too. You might get help from an organisation in your area that oversees health-care or social-care services. You might get home support via psychiatric services. I am not advocating that you get other people to take over feeding (except to give you a break from time to time); it’s best for the long term if you are empowered to do it. But if staff visit your child at home or take her out, it may be enjoyable for her while giving you some respite. A private care agency may provide a regular person you all like and you might find it surprisingly affordable. Social work will tell you what’s available. They may give you access to carers or to funds. Also, check out non-profit organisations whose mission is to care for carers.
Hospitalisation and inpatient treatment
Given that home support or day centres are extremely scarce, thank goodness for the safety net provided by experienced inpatient units.[lv] We may all hate the idea of our precious children being hospitalised, but for some of us the decision becomes a no-brainer.
An inpatient unit is a place where a child can be rescued if she needs to be medically stabilised, or when she’s very undernourished and isn’t having food or fluid, or when she’s self-harming or suicidal, or when you cannot supervise her constantly to break a purging habit. Sometimes, if the staff cannot get a very ill child to eat any more than the parents can, they may use a nasogastric tube and provide constant supervision to ensure it stays in place.
I hope you can get your child into hospital if that’s what she needs. Some parents struggle to get their child inpatient care for an eating disorder other than anorexia. Sometimes hospitals only admit or re-admit anorexic patients if their weight falls below a certain BMI threshold, independently of all the other symptoms or behaviours. I am not even close to understanding this policy.
There are many reasons why hospital staff manage to get youngsters to eat when parents can’t. Your child may eat because she respects the authority of strangers or because she’s embarrassed to make a scene in front of others. Her fear of being tube-fed or detained against her will may trump her fear of eating. Unlike us, nurses are not on an emotional rollercoaster 24/7. They have built up many hours of experience with a range of patients; they get coaching, support, teamwork, and sleep. In spite of all this, they notice how their emotions can occasionally flare up around a child who’s not eating, and they are quite awed by what parents do.
Eating disorders inpatient units
Traditionally, eating-disorders treatment has meant that youngsters were cared for in a specialised eating-disorder unit (or a psychiatric ward that has some eating-disorder beds) for several weeks or months. The unit gets them to gain weight (tube-feeding if necessary) and parents breathe a sigh of relief. Youngsters are discharged when their weight is restored (or close to restored) and when their mental state seems normal (or close enough). The unit does all the work and all the major decision-making. There may be an hour’s weekly family therapy and parents are invited to review meetings, but on the whole, they are onlookers. When the child returns home, the expectation is that she is now able to resume normal life, but what can happen is that as she starts restricting again. She may have planned this all along – she only gained weight to be allowed home – or she may be overwhelmed by the transition to everyday life. Parents may have no more power to help her eat than first time round – when they try, she may protest that the hospital didn’t serve such big portions or never made her eat cheese. Youngsters then get a revolving door situation, getting re-admitted into an inpatient unit whenever the eating disorder gets too strong.
Inpatient units, increasingly, are shifting toward a more family-orientated ethos. The trailblazers make parents (and outpatient services) active members of the treatment team, along principles of family-based treatment.[lvi] They support increasingly long periods at home. This way, when the child is finally discharged, she is used to being skilfully accompanied by her family and the transition is more likely to be successful. Consider for instance that traditionally, dietitians in hospitals devise meal plans in collaboration with patients. The whole ethos changes when it is the parents who make the choices, and when parents are supported to help their child to eat in the unit. With this way of working, patients may be discharged much sooner, because parents have the competence to take over and take care of the transition.
Medical (paediatric) wards
Finally there is a move to using medical (paediatric) hospital wards more skilfully. For years, paediatric wards have not known what to do with a child who won’t (can’t) eat – their job, as they saw it, was to treat kids with asthma or heart problems, not kids with scary mental health problems. This made them eager to pass the child on to a mental health unit as soon as they’d achieved medical stabilisation. This continues to be the situation in many places, and parents tear their hair out because nobody is sitting by the child helping him to eat and checking that he doesn’t bin his food. Staff may also make insensitive or unhelpful comments as they have no education, and no guidelines, relating to eating disorders.
There is now a move for paediatric units to have protocols (pathways) that tell them exactly what to do, in collaboration with outpatient eating-disorders services, in order to intervene for a few days (possibly two or three weeks at the most). With this model, parents are involved and supported in the ward, so that as soon as their child’s health is stabilised, they are able to resume care at home. If all goes well, the child will never need to go into a mental health or eating-disorders unit, because the family is learning and being supported all along (as a result, some inpatient mental health units are finding they now have very few eating-disorder patients, which pleases everyone except, I imagine, the business manager). This model gives a major role to outpatient family therapists, as they are a crucial resource to both parents and the paediatric ward.
Tips: when your child is in an inpatient unit
My husband and I still remember our amazement and relief when we learned that our daughter, within 20 minutes of admission, had calmly eaten a packet of crisps and drunk a glass of milk. It’s a wonderful feeling, and thank goodness for safety nets provided by competent units.
There are huge variations between services, and it’s a big worry for parents when hospitals don’t treat them as valuable members of the team. It means that you have to be constantly on the ball, informing, requesting, checking and complaining. When your child enters a unit, don’t assume anything. Be vigilant. But also recognise when your kid is in safe hands and it’s OK for things to be ‘good enough’.
Here are some pointers to help you work out how to manage hospital-related issues.
- Be aware that some treatment units believe in punitive or highly regimented approaches, so do your research.
- Your child will be surrounded by others with eating disorders or other mental illnesses. Ask what measures are in place to prevent patients sharing weight-loss or self-injury tips with each other. How are children shielded from other children’s distressing behaviour?
In our case, when another child with anorexia joined my daughter’s ward, the two were never left on their own to share tips and tricks. When some of the children had violent outbursts, the nurses would promptly take the other kids into another room. In spite of these precautions, my daughter does seem to have learned more than I would have liked about the traumatic lives of other children. And I didn’t love how she copied some of the other kids’ raucous style. Yet in spite of 11 months of this, none of it stuck. And being exposed to other children’s distress wasn’t all bad – my daughter developed a lot of kindness and understanding for human vulnerability.
- I’d recommend you find out from the unit what their aims are and how they will decide that your child is ready for discharge.
- Even if hospital isn’t perfect, consider the whole picture. The unit may not ‘cure’ your child, but will it give you 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 wish my child hadn’t had weekly diet-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? This is pure conjecture, but I think that with those meal plans we missed 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 and you can’t sweat the small stuff. Once your child is back home, you can stage-manage a clear takeover of control, in order not to be bound by the way the hospital did things.
- You should get support to rebuild your relationship. The hospital should be working to give you the competence and confidence to feed your child at home as soon as possible. You should have practice on the ward, and your child should come home for increasingly long spells.
- It grieves me when units make home visits conditional on the child managing all their food or gaining weight. In their effort to incentivise, they are not just punishing the child. They are disempowering parents and delaying an essential part of the treatment.
- We live close to the hospital and don’t have other children, so it was easy for me or my husband to go in every day. For some people the journey takes several hours, and one parent ends up staying there while the other looks after the rest of the family. For some parents, sadly, phone contact is the only option for days at a time.
- I imagine that some of you will find it very distressing to think of your child being hospitalised for as long as our daughter was. Had I known it would take nearly a year, I’d have been horrified. Could it have been shorter if the unit’s ethos had been different? Quite possibly. But a long stay may be necessary when a child’s mental condition is particular severe and it’s nobody’s fault. I have a friend whose daughter has been an inpatient for a couple of years now, and they have found ways to make this long period meaningful and rich with loving connection.
- I’m incredibly grateful that our hospital cared for our daughter while her opposition to us was extreme. If she’d been discharged before we could feed her she would have kept dipping back to critical levels and having to be re-admitted.
- Things might have been a lot faster for us if the health service had supported us with meals at home. It might have saved my daughter from being in hospital so long – and maybe she needn’t have gone in at all. When she’d been an inpatient for a few weeks, the staff helped us feed her in the ward, but it was still hard for us to get her to eat when she had home visits, and all we could get was phone support. See if you can request more, especially if you live close enough to the unit. Here’s a great example of how a hospital supported a family I know: when the child came on home visits, a nurse came to support each meal until the family got the hang of it. This also reinforced the ‘food is medicine’ message: if the child didn’t manage a meal, the nurse was ready to take her back to the ward right away.
Parents can be overwhelmed by all kinds of emotions when their child goes into hospital. For some parents, there is little relief – there are new types of worries, decisions, frustrations. My own feelings weren’t necessarily what you might expect.
- When the possibility of hospitalisation was first raised, I was horrified. My position was ‘over my dead body’. Then I learned more about what hospital would be like, and realised it might be a place where my daughter would feel safe and well cared for – and this turned out to be the case.
- The speed at which anorexia gained ground was terrifying. So a few days before our daughter was due to be admitted, we were desperate for her to go in even sooner. This was a week when getting half a glass of water into her by mid-afternoon was a major victory. We believed the hospital was going to save her life, and that’s what it did.
- As soon as we set foot in the ward with our daughter, we saw that she would feel well cared for. The staff acted like real human beings. Our daughter thought the place looked wonderful (to us it was old and shabby and rather depressing). This is what she wanted. As a result we were able to drive away without feeling torn, worried or guilty.
- Unlike my daughter, many children resist being in hospital. Sometimes they plead to be taken home. Sometimes they stop engaging with their parents, convinced they’ve been abandoned. This is extra hard for parents, who are already grappling with sadness and with multiple concerns about how their child will be treated. This is a time to get a lot of support and compassion for yourself. You will need a clear head to negotiate many details concerning your child’s care.
- I felt relieved and incredibly grateful for the first few days of my daughter’s hospitalisation. My mother thought I would be a wreck, and I wasn’t. And I refused to feel guilty about not feeling guilty. My daughter was being rescued by competent and kind professional and this made us luckier than a whole lot of parents all over the world.
- I was also relieved that my own personal hell was over. I still had to deal with rejection and hate every day or two when I visited, but that was fine. I acknowledged that the strain on us, as loving parents, had been horrendous, and I allowed myself to enjoy some much-needed peace of mind.
- From what I read, some parents, like me, take advantage of the respite, while others fret. Some can’t relax because they have concerns about the hospital, meetings, and a hundred problems to solve. Sometimes all is as well as can be but parents feel guilty because suddenly they hardly have anything to do. If this is you, treat yourself with as much kindness as you would treat a loved one. You’re part-way through what may be a long journey. Since professionals are caring for your child, use the time to recuperate and rebuild yourself. You may need to curl up in bed and sleep, or to enjoy the company of friends. Your child needs you to be very well, so that you can advocate for her while she’s in hospital and take charge when she’s discharged. Rest. Have fun. And if anyone asks you how you’re doing, tell them what they want to hear: that you’re sick with guilt and worry.
- For me, the whole time that my daughter was in hospital was a time to educate myself about the illness and what could be done. I did a lot of reading, and I did a lot of advocating and requesting, in order to steer my daughter’s care in the direction I believed was best.
- The days when my husband visited my daughter straight from work, when I would be on my own till nine at night, seemed scarily long. I got on with my work, which I do from home. Most days, though, there were meetings of some kind to go to. Both my work and my husband’s suffered, though not irrevocably. I turned down any work that required me to be bright-eyed and bushy-tailed. There are professional situation where tears are not OK.
- 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.”
Hospital emergency units
While I’m on the subject of hospitals, I’ll say a few words about emergency departments. They generally don’t get a good press in the eating-disorders world. Too often the staff don’t have specialised knowledge, and so the child and parents have to endure their judgemental reactions. Families may get sent home after several hours of waiting with: ‘She’s fine. Just make sure she gets a sandwich when you get home.’ Worse, some parents do not trust that the right tests were carried out.[lvii]
Some parents find emergency units very helpful, though, especially if there has been some advance joint work done through the eating disorders service.
A few days before my daughter was due to be admitted into hospital, I got really worried about her state of dehydration and I took her to an out-of-hours doctor. He told her that if she carried on, she’d end up in a medical ward, which would be a shame as she was looking forward to going into the mental health unit. So he made her promise to eat and drink as soon as she got home. I asked that she drink a glass of water right in front of him. I could see the thought bubble over his head: ‘Please no! What if she doesn’t drink?’ It took my kid quite some effort to manage that water, but having that doctor observe her made it possible.
Parents and clinicians in partnership
It’s a no-brainer that the best results come from clinicians and parents working in partnership, and yet I’ve seen ultra-competent parents become powerless victims when clinicians stand on a pedestal. We really need teamwork.
“Our treatment team didn’t get everything right but they were really open to feedback.”
A consulting room should be a place where we parents consult people who have valuable expertise to offer.[lviii] The minute I am a pawn in someone else’s game, governed by rules I haven’t agreed to, my power to be effective diminishes.
There are instances of clinicians abusing the power that comes from their position. Some intimidate, blame, and refuse to discuss options. They can do so in subtle or overt ways. Either way, we get the message that we are not OK, and we find ourselves powerless to intervene in decisions around our child’s care. This can stress us out even more than the eating disorder itself. The minute we step into a consulting room we may be stripped of the qualities that makes us strong. It is remarkable that so many professionals call us Mum and Dad, as though our names were too hard to remember. I find it hilarious to see my husband being called Dad, but it drives him crazy. ‘Take a seat, Dad. How are you today?’ Grrr!
I wonder if we allow some clinicians to have power over us because we truly are in their hands. We come to them at a time of utter desperation. We pray they can save our child’s life and bring peace back to our family. So when the sessions don’t go as we wish, we keep quiet. We don’t want to upset or anger the therapist, because it matters more that our child is getting treatment.
Yet partnership between clinicians and parents means jointly working out the best way forward, often on a daily or weekly basis. That requires equality and great communication. I’ve even heard FBT therapists described as consultants to the parents. There are times when we are exhausted and devoid of imagination and we want experts to tell us exactly what to do. And there are times when we can take the lead because we know our kid better than anyone else and we’ve got the hang of this illness. Clinicians have a challenging job tracking where we’re at and what we need, and for that, we need to talk and assume that they can handle what we have to say.
“I told them they could/should give us more advice and feedback (a kind of coaching) without being afraid they were being too directive.”
Sometimes clinicians seem to lose momentum. A parent whose daughter had been ill for several years told me that the therapists seemed to just go through the motions. The parents, on the other hand, went on achieving milestones at home. When the clinicians saw progress, they seemed to become re-energised and they started offering more support.
The Nonviolent Communication framework outlined in Chapter 13 can help you sort out what’s going on in your head and give you the poise to request what you really want.
A small change – even just informing the clinician of what isn’t working for you – might make all the difference. The therapists may also be ready to change how they do things, and whatever they learn from you will inform how they work with their next patients. Openness and collaboration can do wonders.
Tell your clinicians about this book
If you’ve read this far, I am guessing you have found some tips you would like to try out. I would recommend you are open about this with your clinicians so you can work as a team. If there are disagreements, they’re better out in the open. Refrain from telling therapists how they ‘ought’ to be working. Would you like to be told how to do your job? Instead, tell them how the book is helping you or how it supports their treatment or how you’d like to try out some of the ideas. Ask, ‘What do you think? Could you have a quick look, and let us know?’[lix]
Plan ahead to make sessions fruitful
When we visit therapists, we tend to let them take the lead. But sometimes the hour goes by quickly and issues that are important to us have not been addressed. We shouldn’t expect our clinicians to be mind readers, and so I believe it’s rational and not disrespectful to announce, before the meeting begins in earnest, the topics we really need help with. Work out your priorities with your partner and prepare a list ahead of time. Show that you two are a team, and expect your clinicians to work in partnership with you.
More family therapy without children, please
Standard FBT sessions happen with the whole family together in a room (‘conjoint’). But there is variant (‘separated’ — one validated version of which is named ‘parent-focused’) where parents talk with the therapist separately.
We had a variation on this theme with the therapist who cared for us after our daughter was discharged from hospital. It was a joy to enter into collaboration with her. With time we developed a system that suited us all perfectly. At each family therapy session we would pencil in a time for me to phone her. This was my opportunity to brief her about the week’s progress, tell her about our difficulties and make plans for the coming days. It kept the family meetings upbeat, and my daughter didn’t get to hear things that might have brought on shame or guilt. We also agreed not to use the family sessions to discuss forthcoming challenges, as we knew that in my child’s case, this was counterproductive.
Sessions exclusively between therapist and parents can be very helpful in making sure the therapist knows everything that matters about your child. Sometimes you can feel that your therapist is barking up the wrong tree, and that may be simply that there are things she needs to know which you haven’t yet told her. If your therapist is moving your kid too fast towards independent eating, for instance (Phase II of FBT), perhaps she needs to hear how he’s still hiding food or lying about eating his school lunches.
Based on what I am picking up from distressed parents, I’d have kids come in far less often and have many more parents-only sessions to answer their questions, support them and give them the tools they need to deal with the illness at home. Hey, the youngsters don’t do anything in therapy anyway. They wriggle and squirm and lie and say rude things and then clam up. If your child benefits from attending appointments, shoot me down – or rather, continue what works for you.
Parents want advice
I really hate it when therapists give advice I don’t agree with.
Let me clarify. I don’t hate advice I disagree with; what I don’t like is when there’s no room for discussion. As the recipient of advice, you should feel entirely free to examine it, discuss its merits and weaknesses, assess risks with the help of your expert, and then make a decision. Not only because it’s your child, not only because you know her best, but also because if the advice doesn’t work out and it makes your job of feeding extra hard, it’s very much your problem.
What bugs me nearly as much as coercive, non-negotiable advice is the withholding of advice, the decision to be non-directive even when the parents beg for direction. Some clinicians stand by the principle that we, the parents, are the ones with the power to work out solutions and that they, the clinicians, don’t have all the answers. What doesn’t work for me is when they hold back on their considerable expertise on the basis that we are the experts on our children. If we were so knowledgeable about eating disorders, we wouldn’t be in an expert’s consulting room. We want ideas, suggestions, choices and advice, and if we’re heading down a dead-end road, we want to be told.
“We were in this big circle of parents and young people, and this woman started speaking of her daughter as ‘selfish’. We shifted uncomfortably in our seats. I glanced at the therapists, wondering why they weren’t saying something. Someone changed the subject. So I spoke up. The woman listened and it was like she’d seen the light. Her daughter teared up in relief. At break time, one of the therapists thanked me for intervening. It was surreal.”
If your child had a heart condition, the specialists would answer your questions, so why, with eating disorders, do parents have to do so much research and waste so much time with trial and error?
I guess I’m preaching to the choir. If you didn’t want suggestions and advice, you wouldn’t still be reading this book.
“I don’t think every family has to start from scratch and re-invent the wheel. Sometimes I think Maudsley professionals get so wound up in not being directive that they end up not being supportive enough. We felt at times that they knew what we were doing wrong during meals but had to let us work it out rather than coach and give feedback. This left us feeling that we were experimenting on our child, and that we were being tested (how long would it take us to finally find a way of supporting meals which worked?).”
I know that giving advice is tricky. Empathy comes first. If parents don’t ask obvious questions like ‘How can I get my child to eat?’ then they’re probably too upset to cope with the answer. I also wonder if there’s a theory that by finding their own way, parents are empowered. Or perhaps it’s all a lot simpler.
“We’d ask the therapist for tips, and she’d say we were perfectly capable of feeding our daughter and that we’d find our own way. That made us feel even more incompetent, because we were failing big time. Then one day it occurred to me she probably didn’t have a clue herself. If so, I wish she’d told us straight.”
But I have also seen really knowledgeable therapists keep quiet. On one occasion, I sounded out our specialist about making a major U-turn on the content of meals. She exclaimed, ‘I’m so glad you asked!’ Clearly, she’d been itching for us to go down this new road, but for a reason I don’t understand, had waited for the impetus to come from us. Meanwhile we’d been meekly maintaining the status quo even though we hated it, because we thought it was what was expected of us.
So when we want answers, what can we parents do? I’d suggest we make our requests for advice crystal-clear. Until we do, the experts may have all sorts of reasons to hold back. So, ask, ask, and ask again.
Parents with eating disorders
Given that eating disorders have a major genetic component, it is to be expected that many parents have suffered from one themselves. Are you worried that you will be blamed or excluded from your kid’s treatment if you yourself have a history of the illness?
In principle, it shouldn’t be an obstacle. Family therapy has been shown to have a decent success rate, and the method doesn’t exclude parents with eating disorders. In some places, if a parent is in an acute phase, they’re asked to get treatment for themselves. I imagine that there is no problem as long as the parent is on the alert for anything they do or say that contradicts what they want for their child. Even without an eating disorder, we parents are part of society, and there are unhelpful messages and misinformation around healthy eating, fatty foods and body shape that we need to untangle ourselves from.
Supporting a child who is suffering can awaken emotions from vulnerable times in our own childhood. Mindfulness helps us to take care of our children as our true self, not as a hurt, scared or angry child. For some parents, this is a springboard to healing and growth for themselves.
After the terrible old days of ‘parentectomies’, it’s a relief that enlightened therapists make parents part of the treatment team. Our need to feel competent and empowered is pretty fundamental. If this need isn’t met we turn into doormats or behave like a bull in a china shop. But being empowered also helps us make decisions on the fly. We can’t run to the therapist every time we hit a new variation on a problem. We may not ever feel totally competent, but we can at least aim for ‘good enough’.
In addition to how we feel about ourselves, it’s also absolutely essential for parents to be empowered in their child’s eyes. How else can we get our child to trust us more than they trust their disordered internal talk? Our first instinct may be to lean on the expert’s authority, but soon you can end up with triangulation: ‘The therapist said that I didn’t have to wear a hat and gloves if it’s not cold outside.’ Imagine having to wait a week for an appointment before you can resolve that one!
I noticed our eating disorders specialist very deliberately handing power over to us. There was one phone call where I told her of my desire to ditch the meal plan we’d inherited from the hospital. She validated that with enthusiasm. Next, I asked her how she would bring it up at our next appointment. I knew it would be a huge blow to my daughter and I expected the therapist to weigh in with her professional authority. No such luck. If I was entertaining the slightest hope that I could hide behind an expert and be shielded from my daughter’s reaction, I was sorely disappointed. ‘YOU will tell her,’ she said. ‘You and your husband are the people most competent to care for her.’
After a while my daughter started complaining as we drove to the appointments. She’d say, ‘She’s nice but I don’t need her. YOU know how to look after me.’
Your clinical team: is everyone on the same page?
If psychotherapists, counsellors or coaches are not well integrated in an eating disorders team, we should beware of our kids getting mixed messages. It would be so unhelpful if a therapist helping a child with her anxiety, for instance, talked about diets or body shape, or pushed her to make her own food choices without the parents’ agreement. The risk of this happening is quite high when big teams are involved.
At one stage, around 20 people seemed to have an interest in my daughter’s care – hospital staff, outpatient staff, eating disorder experts, and even representatives from her school. That was 20 people round the table at hospital review meetings every few months.
It’s an amazing feeling to see so many people rooting for your kid, scratching their heads about how best to help her, being delighted at her progress. And to have them all give us, the parents, a lot of consideration. One example of great teamwork was how my daughter’s education never fell behind. The link between clinicians and school was beautifully handled. But having a lot of experts, each giving you appointments, can mean that your child gets pulled out of class or deprived of fun several times a week. Yet it might be that only one or two people are directly useful to her.
Most of all, is everyone singing from the same hymn sheet? Sometimes you can get various parties pulling in opposite directions, and your child is piggy in the middle. We had a little bit of that, though we didn’t realise it at the time. For some families, the contradictions can be disastrous. Here’s an extreme illustration: say you are (in my opinion) lucky and you get family therapy with a trained eating disorders specialist, who wants you, the parent, to be in charge of your child’s meals. But say your underweight child also sees a dietitian who wants to negotiate meal plans with her, a doctor who says she can now stop gaining weight, a psychologist who believes that your adolescent needs independence, a something-or-another therapist who shames her for refusing dinner, and a psychiatrist who insists on one-to-one sessions to explore the reasons why, deep down, your child is using her eating disorder as a defence mechanism. See the problem?
The experts each believe in their own experience and competence. They may all believe they’re up to date with the research. You can be sure they are gritting their teeth and tearing their hair out about their differences, but they do so privately. They don’t discuss their colleagues with us parents. The best they can do is build bridges and hope to get others to come to their points of view, but what with hierarchies and politics and shows of respect for each other’s professions, you can imagine it’s not going to happen in a hurry.
It grieves me to see a child pulled in all directions and parents getting confusing messages while experts stay diplomatically silent. But what can be done? This is yet one more thing that falls on parents’ shoulders. Keep asking questions. Don’t be scared if you put some of the professionals’ noses out of joint. Find out about people’s training and what models they hold of the illness. Be your child’s best advocate. Make your choices.
One mother who read a draft of this book told me, ‘Cut that last bit out. You don’t have any choices.’ But she made important choices over and over, striving to make the best of a disjointed and ineffective treatment team.
“I arranged meetings with all professionals involved to get them on the same page. I threatened that otherwise I would write to the hospital board.”
Eventually she and her husband got rid of everyone except the family doctor and successfully took over their daughter’s care.
Scrapping unhelpful treatment
Sometimes treatment can be so ineffective – or even harmful – that you wonder if it’s time to cut your losses and run.
One seemingly trivial reason why we stay put is that we want to be nice. Sometimes we feel sorry for our therapists.[lx] We appreciate that they mean well and have worked very hard for us. We imagine they are so vulnerable that we will hurt their feelings if we tell them we don’t want their services any more. Nobody’s needs are met when you’re nice.
Sometimes we put therapists on a pedestal and we fear that if we don’t behave like compliant children, they will judge us. It shouldn’t matter what people think of us, but humans are social animals. Sometimes we’re so cross that we thrash about, blame and complain, but we’re unclear about what we really want.
If your treatment team has been blaming you and excluding you, I’m guessing that your self-confidence is at an all-time low. You’ve been consistently told you’re a worrier, that you’re over-controlling, and that your child would happily eat if only you stopped trying to feed him. Your spouse may be telling you that the doctors know best, but your gut begs to differ. Perhaps you are indeed entirely wrong. On the other hand there are many examples of parents’ instincts being validated after a move to a new therapist.
As you toy with the idea of walking away from a treatment provider, you may feel extremely vulnerable, alone, and somewhat reckless. Yet if you know that these people are letting your child get worse or are undermining your own work, part of you knows it’s crazy to stay with them. What might be holding you back is the possibility that they’re better than nothing. Do you fear that if one of them took the huff they could make it more difficult for you to get access to other health services? Are you worried about burning your bridges and being left stranded if your child gets worse? We certainly felt quite vulnerable whenever, for any reason, a relationship with a therapist came to an end, and it was good to know we could get prompt support again if we needed it. You’ll need to check the situation where you live, but where I am, refusing one type of treatment would not remove the safety net; a child would still be admitted into hospital if he needed it.
If you’re struggling with doubts, it seems to me you need support to consider your options. It may help you to talk through your uncertainties with other parents on helplines or online or at local groups. You have to make these decisions for yourself, but it helps to learn from other people’s experience and you may clarify your thoughts by having people hear you out.
When you’re excluded from your child’s therapy
When it comes to psychotherapists, many want to see children alone if they’re not specifically doing family therapy. You are just the taxi driver. The main reason, I think, is that this is how the psychotherapist has been trained to work, and it may also be how the evidence-based approach they are using is normally used.
The reason I usually hear is that our children need some space and privacy to express themselves. Your child might have things to say she dare not say in front of you in case you get cross or sad. The other argument is she’s at an age when kids need independence from their parents – and in our individualistic society, this independence gets mixed up with a cutting off of connection.
When a child – whatever their age – goes through cancer, does anyone think it’s weird that parents gather round?
I have come to detest how kids get whisked off for individual therapy. In theory, I love the idea. What could be more relaxing for a parent than to delegate one of the most difficult tasks to a competent, effective therapist? In practice, excluding parents can have terrible consequences. So many parents regret sending their child to individual therapy or hate that they had little choice in the matter.
For example, what can you do when a child comes home from a session, quoting some destructive statement like ‘She said I’m old enough to make my own food choices’? Or, ‘She thinks you’re over-protective and I should stop telling you things’? I haven’t made up these examples.
Very often our kids hate their therapy sessions with a passion. They say they’re boring, useless or horrible. We don’t have a clue who to believe because we’ve only met the therapist for a few minutes at a time. So we don’t know whether to encourage our child to continue the sessions, or to call it off. We have so little to go on to know if the therapist is competent. What a leap of faith!
The therapists who insist on seeing our kids alone probably cannot imagine how a parent’s presence would be anything but a hindrance. It may go against every professional belief they hold. They may be bound by the rules – implicit or explicit – of their organisation. They may not feel confident about holding a session while you’re present, and they may not be open to trying new approaches or taking risks. Worse, if they are not specialised in eating disorders, they may not realise quite how counter-productive it is to ask an underweight child to take responsibility for their treatment.
See if the following points help you reach some clarity about what is right for you.
First, you now know that individual therapy is not best practice to treat anorexia. If it has a place alongside family therapy, it’s to address conditions like anxiety, OCD or depression, normally after the child is anorexia-free.
If there’s a good reason for her to be getting eating-disorder-specific CBT, then you may have to accept that it is a one-to-one therapy. However you can take the time to discuss what you will be told, and what information you can contribute. If you know your child is not telling the therapist the truth about restricting, purging, or OCD behaviours, you will want a route to providing information. Remember that our children can put on a great show of being perfectly fine, or as in my daughter’s case, they can clam up and nothing is achieved.
If your child is getting therapies like ACT or DBT, she’ll be learning new ways of thinking, new tools. Wouldn’t it be great if you were there to learn them too? That way, you could integrate them into everyday life, rather than having to nag your kid to fill in her worksheets.
One-to-ones waste precious opportunities for parents to help a child express herself. Because, however insightful the therapist, and even though parents have their blind spots, we know and love our kids better than anyone else.
When parents are present, a great therapist can help nurture family relationships. If the child really needs independence, let her experience be heard and respected in a supportive environment. If she’s scared that what she says will upset us, let her see how we are here for her, no matter what. A child will have a hard time becoming truly autonomous if she’s doing it from a place of opposition or strife. Attachment and independence are complementary, not contradictory. You can’t be a fully free individual without having secure relationships, and vice versa. The most significant relationship in a child’s life is the one with her parents. We really matter – for better or for worse.
When you hand your vulnerable child over to a complete stranger, you have good reasons to wonder if you’re doing your job as a parent. This isn’t like the flutter most of us felt when our child first went to school, it’s about levels of risk – she has a serious illness, and a lot hangs on how people talk to her about it. Qualifications are no guarantee that your child is getting what she needs. As a parent and as my child’s advocate, I am responsible for checking that my child is in good hands, and I can’t do that if I’m sitting in the waiting room.
The underlying fear that stops us discussing this issue openly is that we may be labelled as over-controlling and over-enmeshed. We can be seen as getting in the way of our child’s development. By requesting we be included in our child’s therapy, we may be confirming a therapist’s belief that we are domineering and that our child really needs space away from us. So we keep quiet, for fear of making things worse. Because we really want our child to be helped in any way possible.
My view is that our children are in the grip of a serious illness and it is correct and essential that parents take on an active, protective role. I would like that to be seen by the professional world as valid, necessary, and entirely appropriate.
What if we really are bad for our children and we don’t know it? If a therapist sees a parent who criticises, blames, takes over, and so on, doesn’t this makes family sessions all the more important? How else is the parent going to learn self-awareness and new skills?
I would like parents to keep their power to be their child’s best advocate, so let me give you an example.
I moved heaven and earth for my child to see an EMDR therapist after her discharge from a year in hospital. My daughter still seemed to equate thinness with safety, and since we both knew that the decision to diet had been triggered by a bullying incident, it made some sort of sense. I really hoped that now that her weight was restored and her rational brain was in working order, EMDR could help her.
Well, my daughter took great pride in taking the therapist for a ride. Everything I had briefed the therapist about, and which she gently explored, my daughter would deny. Then my child would saunter home, tell me all about her lies and laugh at the therapist’s credulity. It was heartbreaking, because she did at some level want help. So I asked for us to all meet up and I explained the situation. My daughter and I proposed that I should join the sessions to act as my daughter’s intermediary, a translator of sorts. I knew what her issues where. I knew what the EMDR therapist needed to know from her. With very young kids, EMDR is routinely done with the help of a parent. But in spite of my pleading, this therapist wouldn’t hear of it. She was an educational therapist and I doubt she’d had specialised training in child EMDR or that she’d ever done an EMDR session with a parent. It grieved me that she was not open to trying it.
For some parents the toughest issue around individual therapy is the professionals’ stance regarding confidentiality. Confidentiality rules may depend on your child’s age, and it may depend on how the treatment provider chooses to work with (or around) mental health laws that were not designed for illnesses like eating disorders. It is very painful for parents to sense that an inpatient unit is making no effort at all to find a solution. ‘Your son doesn’t want to speak to you. He doesn’t want you to know anything about his weight or his blood test results. Sorry and goodbye.’ Depending on where you live, this could start as early as age twelve.
When a twelve-year old has diabetes, are doctors so casual about withholding blood test results from parents?
If you’re caring for your child at home, and if she reveals in an individual therapy session that she’s secretly vomiting, self-harming, or hiding food, how is confidentiality going to help you to care for her and nourish her?
I hope that your treatment providers have a sensible and compassionate approach to confidentiality. Rigid rules are not helpful. It should be possible for parents, children and therapists to discuss how to handle issues as they come up.
See if this example helps you discuss confidentiality with your child’s clinicians. In this guide for CBT therapists,[lxi] Glenn Waller explains how he introduces the issue at the start of treatment. He tells the young person that while what she talks about is private, except if what she said revealed that she (or another young person) was in some kind of danger or at risk. He assures her that he would not pass on information without discussing with her who needs to know and how to tell them. The book then gives the example of an underweight 15-year old who disclosed in therapy that she was secretly vomiting at home. The therapist considered the seriousness and level of risk meant others needed to know, and the two discussed how and when to tell the parents.
We had mostly good experiences around confidentiality. For example there was an occasion when our daughter said that something was seriously troubling her. This was during a family session in the hospital, and she refused to give any details. We were delighted to find out that her favourite young, trendy nurse – whom we trusted wholeheartedly – was on duty that night. Our daughter was ready to speak to her. The next morning, this delightful nurse phoned me and without going into any level of detail 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 it doesn’t matter.
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.
Many of these issues around confidentiality are avoided with treatments that fully involve parents.
Children above legal-age thresholds
“Turning 18 can put pressure on a child. Services suddenly want to refer her to the adult services. Friends and classmates start to move away from home, giving her the feeling she should do the same.”
Many parents fear that as soon as their child turns 18, she will suddenly refuse to sit down at the dinner table. In practice, many youngsters continue to accept their parents’ care, even if they fight individual meals. Just as my 10-year-old could have run away every morning before breakfast, 18-year-olds don’t necessarily walk off just because they have the legal right to do so.
All the same, as your child gets older, it becomes harder to care for her if she rejects any form of support.
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 also make provisions to detain patients and enforce treatment against their will. In some places, these issues kick in when your child is as young as 12.
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 her 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. Your kid’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 she won’t suddenly change her mind.
Mental health laws fail to protect many eating-disorder sufferers. Young people above a given age can avoid treatment by keeping their weight very low but not so low as to get them sectioned.
This is a dreadful situation, because it’s part of the nature of the illness that patients don’t consider themselves seriously sick (anosognosia), and even when they do, the fear of eating and putting on weight can be too much for them to willingly sign up for treatment. In several countries, parents and organisations are campaigning to change laws.
Sometimes we parents struggle not so much with the law as with the policies of treatment providers: a clinician’s focus may be on a young adult’s autonomy, while our own priority is for our child to be nourished and made safe. When clinicians believe that parents are part of the problem, not part of the solution, everybody suffers.
I have friends abroad whose 18-year-old daughter had willingly entrusted herself to her parents by giving them power of attorney. In spite of this the local eating disorder services would only treat her if she checked herself in of her own accord. This was just too hard for her. She needed her parents to carry the burden of decision-making at a particularly stressful time. So what happened? She got better at home, without therapists, supported by her parents.
If you’d like to find out what the laws are in your country, try these internet search keywords: ‘mental health law’, ‘detaining orders’, ‘section under the Mental Health Act’, ‘impaired decision-making ability’ and ‘compulsory treatment, citizen’s advice’. Depending on where you live, guardianship or power of attorney may offer solutions.
Even though the laws may not serve you well, when there’s a will there’s a way. A clinician may not be allowed to talk to you about your child, but may work at securing the patient’s agreement to involve you. Importantly, no law prohibits them from listening to you. Get hold of them, describe your child’s symptoms, and explain how you see the risks. [lxii]
You have a great big lever on your child: money (assuming your child depends on you financially). I know of parents who have used the money lever to secure their child’s agreement to treatment or to entice their young adult home for a spell of refeeding.
Threats always carry some risk. If you tell your child she can only live in your house if she accepts treatment, she may decide to live with a succession of friends instead. You can’t assume that they will help her to eat, or that they will 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.[lxiii]) 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.
You have one huge asset: your relationship. Your child may fight you much of the time, but she is mostly fighting internal conflicts. While she is in distress you can bet she is longing to lean on you and receive your care, love and guidance.
Therapy, coaching and emotional support for parents
It is ironic that while children are subjected to ineffective psychotherapy, the people who badly need psychological support – the parents – only get to perform the taxi service. My hunt for emotional support began when I realised that not only was I bursting into tears on a regular basis in the most inappropriate of places (leading to a pathological attachment to my sunglasses), but for the first time in my life I’d caught myself toying with fantasies of self-harm. In those days I could withstand my child’s resistance without showing my reactions, but it came at a cost. I was a pressure cooker of emotions.
At the same time I did feel powerful. I was not a depressed wreck. I was on a hero’s journey, with an all-important destination. I was limping and my blisters were giving me hell, but I wasn’t a cripple. All I wanted was some trusted companions to bandage me up and apply healing ointments so I could continue on my mission. In short, I was like all the parents I’ve ever come across who are helping a child beat an eating disorder. There are parental acts of heroism going on all over the planet, day in, day out.
In an ideal world, all parents supporting a child with an eating disorder would be offered individual support (described as counselling, coaching, or psychotherapy), as well as group support. I believe this is reasonably standard if your child or your spouse is being treated for cancer. Most of us, however, have to hunt for support and pay for it. If you’re not familiar with therapists, counsellors or coaches, what follows may help you find what you need.
I myself now offer individual support to parents[lxiv] and could describe myself as a counsellor when people’s needs are mainly emotional, and as a coach when people want tools to get their child to eat, to communicate better, or to manage their emotions.
Therapists who will help you flourish
Psychotherapy (often shortened to ‘therapy’) refers to any kind of psychological care. Some psychotherapists (often shortened to ‘therapists’) are qualified clinical psychologists, some are kind people who’ve done a counselling or coaching course, and some are really, really loving people who have received special healing powers by a person with a direct line to God. Qualifications are no guarantee that sessions will be any different from sitting by the fire and throwing a ten-pound note in every few minutes. It’s nearly impossible to know if a particular therapist will be any use until you’ve given them a trial run, though their websites can help you make an initial assessment.
The most common types of psychotherapies are individual (one-to-one) talking therapies, and within this category, there are gazillions of schools, models and methods. Some focus on behaviour change, some work on the past, some concentrate on the present or future. Some are based on talk, others on the body and emotions. Some are evidence-based, and some are not. What emerges from research is that the method doesn’t matter as much as your connection with the person on the other side of the Kleenex box.
My own hunt for support
The day my daughter’s clinicians realised how bad I felt, they got me a prompt referral to a senior psychologist. This person did psychodynamic therapy – that’s therapy rooted in psychoanalysis. She couldn’t relate to my request to help me build on my strengths in order to be there for my daughter, meal after meal, day after day. I guess she didn’t have the tools to do it. Her approach was to have me talk about my childhood years and look for insights around how my parents might have caused me harm. Warmth and kindness were not on the menu – professional detachment is seen as a virtue in many schools of psychotherapy. Nor did I have any hope she would ever see me as a fellow human being worthy of dignity and compassion. I saw myself suddenly as a bundle of potential hang-ups, contradictions and weaknesses, a helpless victim of a childhood that couldn’t possibly be good enough.
Don’t get stuck with a therapist like that. Indeed many therapists work on the presumption that we are deficient. Their outlook is one of illness, of alleviating misery, not flourishing or fulfilment. They see your ongoing difficulties as your failure, not theirs. Would you keep taking your car to a garage, week after week, if your car continued to gurgle and splutter?
Find someone who aims to make you well. Better than well – someone who can help you blossom, flourish and enjoy life to the full. The field of positive psychology has opened up all these possibilities.
After one session my psychodynamic therapist, the only way for me to get prompt support was to go private. It really hurt to find out what the going rates were. But my husband and I put it in the category of ‘things that come along with the illness and become a priority’.
As it turned out, an excellent psychotherapist can go a very long way. I stopped crying after one session with a kind therapist trained in the ‘human givens’ approach (a form of therapy I’d never heard of but the website was promising).[lxv] 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, knee-jerk reactions and the limbic brain, which helped me make sense of my reactions and confirmed my guess that my daughter’s outbursts didn’t help her heal. 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)[lxvi] and I stuck with her for her human qualities – and because I could see immediate results. Not only did I get a boost when I needed it, I also could see my general resilience and well-being shooting up.
How to choose the right person for you
If you long for support, I hope you will find an excellent therapist.[lxvii] If you’re not rich, you may discover that after a couple of sessions you are strong again, and it may be that all you need is the occasional top-up every now and again. Be aware, also, that many psychotherapists adjust their rates to suit your financial situation.
One session might be enough to test a therapist out, and even before that, their website might give you some clues. Notice what’s going on for you during the first session. Do you get a sense of being heard and supported? Of being held as an equal, with respect for your shared humanity? Do you feel calm and do you get a sense of assurance and relief seeping back into your body? Are you more ready to give the best of yourself at home and do you feel generally energised? If so, you’ve struck gold. Never mind the method – you’ve got yourself the therapist you need.
PhDs and top qualifications don’t guarantee you will get a great therapist, though if you are suffering from trauma, depression or anxiety it would be wise to aim for someone with solid experience, training and supervision. For the rest, check out various therapists’ experience and personal qualities, and see if what they offer matches your needs.
A word of caution, as your therapist may not be knowledgeable about eating disorders. They may not appreciate that your kid’s behaviours are not within his control. They may be shocked by the relentless intensity of what is going on in your home. You need help with unconditional acceptance for your child, not more judgement, so be ready to educate your psychotherapist.
More on psychotherapy approaches that might be on offer to your child or yourself. Some are well worth pursuing, others possibly not. All on anorexiafamily.com/psychotherapy-eating-disorders-anorexia
- 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
- Repetitive transcranial magnetic stimulation (rTMS)
[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] Search for organisations that provide information and support on patients’ rights. In the UK, consult Citizens Advice Bureau.
[v] 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
[vi] Glenn Waller (2016), ‘Recent advances in psychological therapies for eating disorders’ F1000 Research http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4841195/
[viii] Eva Musby: ‘England’s new eating-disorder treatment standard: a model for the rest of the world?’ anorexiafamily.com/nhs-england-commissioning-guide-eating-disorders-access-waiting
[ix] For instance, Ellison, R., Rhodes, P., Madden, S., Miskovic, J., Wallis, A., Baillie, A., Kohn, M. and Touyz, S., ‘Do the components of manualized family-based treatment for anorexia nervosa predict weight gain?’ in Int. J. Eat. Disord. (May 2012), vol. 45, no. 4, pp. 609–14, http://www.ncbi.nlm.nih.gov/pubmed/22270977. This showed that parents taking control, being united, not criticizing the patient and externalizing the illness predicted greater weight gain. Sibling support did not predict weight gain.
[x] South London and Maudlsey NHS Trust, Specialist Child and Adolescent Eating Disorder Service (CAEDS). https://www.national.slam.nhs.uk/services/camhs/camhs-eatingdisorders/
In 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.
[xi] 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.’
[xii] 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, and Eisler’s note that ‘The model has not as yet been subject to any empirical evaluation.’ http://tinyurl.com/nqggotg I am told that research will soon be published, demonstrating that including multi-family therapy produces better outcomes.
[xiii] Minimum 4-day training given to experienced therapists in many UK eating-disorders teams (https://www.national.slam.nhs.uk/services/camhs/camhs-eatingdisorderstraining) (though Scotland is mostly FBT-trained). From what parents tell me or write on forums, some find multi-family incredibly helpful, while others say it wasn’t for them. In the US, UCSD ’s intensive multi-family therapy program (http://eatingdisorders.ucsd.edu/treatment/oneweek-intensive-treatment-programs.html) was developed with Ivan Eisler’s input. It differs from the UK approach and generally gets a big thumbs up from parents.
[xiv] Lock, J., Le Grange, D., Agras, W. S. and Dare, C., Treatment Manual for Anorexia Nervosa: A Family-Based Approach (http://amzn.to/ZkagY7). This book is written for clinicians but it’s totally accessible to parents and full of useful information.
[xvi] ‘Family Therapy for Adolescent Eating and Weight Disorders: New Applications’, edited by Katharine L. Loeb, Daniel Le Grange, James Lock, 2015. http://amzn.to/1avbchl
[xvii] For more on the difference between FBT (often called ‘Maudsley’) and the ‘New Maudsley Method, read ‘Navigating the Search for True Maudsley Treatment’ on the MaudsleyParents website. http://maudsleyparents.org/uofchicagoadvice.html
[xviii] Treasure, J., Smith, G. and Crane, A., Skills-based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method. Note that this is method is different from the so-called ‘Maudsley Approach’, or Family-Based Treatment (FBT) manualised by Lock, Le Grange et al.
Another book by the New Maudsley team is Anorexia Nervosa. A Recovery Guide for Sufferers, Families and Friends by Treasure, J. and Alexander, J. (Routledge Mental Health).
The website of the The New Maudsley Approach (http://thenewmaudsleyapproach.co.uk) has a practical tools for parents to help them support their (mostly adult) loved one.
[xix] Fisher, C. A., Hetrick, S. E. and Rushford, N., ‘Family therapy for anorexia nervosa’ in Cochrane Database Syst Rev (April 2010), vol. 14, no. 4, CD004780, http://www.ncbi.nlm.nih.gov/pubmed/20393940 reviewed trials where interventions described as ‘family therapy’ were compared to other psychological or educational interventions. On the whole, there seemed to be little advantage in family therapy. In other words, don’t assume that just because Family-Based Treatment works, any other form of family therapy will work too.
[xx] 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 For the 78 adolescents receiving FBT, the remission rates were 33.1 per cent at end of treatment and 40.7 per cent at the 12-month follow up. For the 80 adolescents receiving systemic family therapy, the corresponding figures were 25.3 per cent and 39.0 per cent. These differences were not statistically different. 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.
[xxi] 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
[xxii] Prior to the research conducted on FBT, ‘the evidence’ for anorexia treatment was ‘weak’, the literature ‘sparse and inconclusive’, according to Bulik, C. M., Berkman, N., Kimberly, A. et al, ‘Anorexia nervosa: a systematic review of randomized clinical trials’ in Int. J. Eat. Disord. (2007), vol. 40, pp. 310–20, http://onlinelibrary.wiley.com/doi/10.1002/eat.20367/abstract
Some figures for patients not treated with FBT are available from Strober, M., Freeman, R. and Morrell, W., ‘The long-term course of severe anorexia nervosa in adolescents: survival analysis of recovery, relapse, and outcome predictors over 10-15 years in a prospective study’ in Int. J. Eat. Disord. (December 1997), vol. 22, no. 4, pp. 339–60, http://www.ncbi.nlm.nih.gov/pubmed/9356884
Here’s an overview from this paper: Other review studies reported that 32 per cent to 68 per cent of people who’d had anorexia as youngsters had, some years later, a ‘good outcome’. Mortality, including suicide, was 1.8 per cent to 14.1 per cent. Strober’s study followed adolescents treated in one intensive inpatient unit, which provided weight-restoration, individual and family therapy. Ten to 15 years later, none of the 95 patients died. There was a ‘good outcome’ in 86 per cent of patients, and 76 per cent of patients made a ‘full recovery’. But it took a long time to get them there: 57 to 79 months, depending on the definition of recovery.
[xxiii] The statistics I present for the effectiveness of FBT come from a number of 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
The National Institute of Mental Health in the US funded a review of many forms of treatment. It concluded that ‘the evidence base is strongest for the Maudsley model of family therapy for anorexia nervosa’. Keel, P. K. and Haedt, A., ‘Evidence-based psychosocial treatments for eating problems and eating disorders’ in J. Clin. Child Adolesc. Psychol. (January 2008), vol. 37, no. 1, pp. 39–61, http://www.ncbi.nlm.nih.gov/pubmed/18444053
As a result, The National Institute of Mental Health recommends FBT for the treatment of young people with anorexia: http://www.nimh.nih.gov/health/publications/eating-disorders/index.shtml
Lock, J., ‘Evaluation of family treatment models for eating disorders’, Curr. Opin. Psychiatry, (2011), vol. 24, no. 4, pp. 274–9, http://www.medscape.com/viewarticle/744675
The main randomised controlled trial on Family Based Treatment (FBT) is 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 study randomly allocated 121 adolescents aged 12 to 18 to either FBT or a form of individual psychotherapy (AFT) previously shown to be promising. At the end of a 12 months of FBT treatment, 42 per cent of patients achieved full remission. 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).
A year later the number of patients achieving full remission had risen to 49 per cent. (I wonder if the rise is due to time, or to the individual therapy, family therapy and hospitalisations that some patients had after FBT treatment.)
Now remission is all very lovely, but anorexia is known for its high rate of relapse. So how did these patients in remission do? Well, 10 per cent of them relapsed within one year.
If you’re happy to settle for less than perfection, then you might be heartened to note that at the end of treatment, 89 per cent of youngsters achieved partial or full remission (‘partial’ means they got moderately close (>85 per cent) to their expected weight). And of those, 18 per cent relapsed within a year.
Within a year of the end of FBT treatment, 8 per cent of youngsters were hospitalised.
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.
Since the 2010 randomised controlled trial, another was reported on in 2014, this time comparing FBT with another form of 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. For the 78 adolescents receiving FBT, the remission 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
The main FBT studies focus on 12 to 18-year olds, but results are similar with under 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
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
[xxiv] 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
[xxv] ‘Young adults with anorexia: not too old for family therapy’ by Eva Musby (2015) http://www.mirror-mirror.org/treatment-for-young-adults-with-anorexia.htm See also an earlier account: http://www.maudsleyparents.org/youngadults.html
[xxvi] ‘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
[xxvii] For a wonderful description of Phase II in FBT, I refer you once again to Dr Sarah Ravin’s ever-informative blog: Navigating Phase II, http://www.blog.drsarahravin.com/eating-disorders/navigating-phase-ii/
[xxviii] Dr Sarah Ravin writes about the main issues addressed in Phase III in http://www.blog.drsarahravin.com/eating-disorders/navigating-phase-iii/
[xxx] Train2treat4ed lists certified FBT therapists: http://train2treat4ed.com. They may not all be there because they have to pay to be on the site. I list those who are available to treat via Skype on http://anorexiafamily.com/certified-fbt-therapists-family-based-treatment-who-skype/. The site Maudsley Parents lists FBT therapists along with some information about them: http://maudsleyparents.org/providerlist.html
[xxxi] 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 When 210 FBT therapy tapes were audited for ‘fidelity’ to the FBT approach, the mean scores were only 4.15 (standard deviation 0.94) on a 0 to 6 scale.
[xxxii] Family therapy for adolescent eating and weight disorders edited by Katharine Loeb, Daniel Le Grange and James Lock, Routledge, 2015 http://amzn.to/1NN56aF
[xxxiii] Therapists offering CBT-E may go through certification with Christopher Fairburn (http://credo-oxford.com) but if they already know general CBT and are experienced in dealing with eating disorders, they may also learn the approach from his manual. Glenn Waller delivers training on demand.
[xxxiv] Glenn Waller (2016), ‘Recent advances in psychological therapies for eating disorders’ F1000 Research http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4841195/
[xxxv] See the UK’s NICE guidelines for eating disorders (2004): http://www.nice.org.uk/guidance/cg9/evidence/full-guideline-243824221. Note that these guidelines badly need to be updated and revised. CBT-BN (for bulimia) and CBT-BED (for binge-eating disorder) have been enhanced and replaced by CBT-E.
[Update: revised NICE guideline published May 2017, summarised here]
See also Hollon, S. D. and Wilson, G. T., ‘Psychoanalysis or Cognitive-Behavioral Therapy for Bulimia Nervosa: the Specificity of Psychological Treatments’ in Am J Psychiatry (2014), vol. 171, pp. 13–16, http://ajp.psychiatryonline.org/article.aspx?articleid=1809634
[xxxvii] Dalle Grave, R., Calugi, S., Doll, H. A. and Fairburn, C. G., ‘Enhanced cognitive behaviour therapy for adolescents with anorexia nervosa: an alternative to family therapy?’ in Behav. Res. Ther. (January 2013), vol. 51, no. 1, R9–R12, http://www.ncbi.nlm.nih.gov/pubmed/23123081. Two-thirds of 49 adolescents completed the full 40-session treatment. Their weight showed ‘a substantial increase’, but note that only one-third reached ‘95 per cent of the expected weight for their age and sex’. Their ‘eating disorder psychopathology’ showed a ‘substantial decrease’. At follow-up 60 weeks later ‘there was little change’.
[xxxviii] ‘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
[xxxix] Glenn Waller (2016), ‘Recent advances in psychological therapies for eating disorders’ F1000 Research http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4841195/
[xl] The CBT-E manual for therapists, which lays out the approach’s protocol, is easy for parents to read and has a chapter on patients in their late teens: Fairburn, C. G., (2008) Cognitive Behavior Therapy and Eating Disorders (http://amzn.to/1s6sFOj). Patients are normally asked to read Christopher Fairburn’s book Overcoming Binge Eating (http://amzn.to/1Agdutv).
I found it very useful to contrast the CBT-E manual with this highly readable book for therapists, which presents detailed guidance rather than a strict protocol: Waller, G., Cordery, H., Costorphine, E., Hinrichsen, H., Lawson, R., Mountford, V., Russel, K. (2007) Cognitive Behavioral Therapy for Eating Disorders: Comprehensive Treatment Guide (http://amzn.to/1Pwspuh), which also has a chapter on children and adolescents. From the same authors, see also Beating Your Eating Disorder: A Cognitive-Behavioral Self-Help Guide for Adult Sufferers and their Carers (http://amzn.to/1RUAQdi). This is designed to help identify whether one or a loved one has a problem; to suggest what to do to help oneself or a loved one; and to point out how to go forward into formal help if that self-help is not working (including what to look for in a good CBT therapist).
Glenn Waller tells me that other evidence-based adaptations of CBT, apart from Fairburn’s, are Bulik’s and Ghaderi’s.
I’m grateful for my discussion with CBT-E therapist Alison Jane Geddes, registered mental nurse and psychological therapist at Mind My Health www.mindmyhealth.co.uk
[xli] Glenn Waller and colleagues (2016): a new ten-session version of CBT (CBTi – for intensive) for non-underweight cases. ‘We have just completed and reported on a case series of about 100 patients, and we get results that are nearly as good as the 20 session evidence-based versions, like CBT-E and others.’ To be published.
[xlii] Lock, L., Le Grange, D., Agras, W.S., Moye, A., Bryson, S.W., and Jo, B., ‘Randomized Clinical Trial Comparing Family-Based Treatment to Adolescent Focused Individual Therapy for Adolescents with Anorexia’ in Arch. Gen. Psychiatry (October 2010), 67(10), pp. 1025-1032, http://tinyurl.com/a322bg7
Half the adolescents were given FBT, while the other half were given the most promising type of individual psychotherapy available at the time: AFT. AFT is designed to use the therapeutic relationship to foster independence, autonomy and self-management of anorexia nervosa symptoms.
The two approaches had similar results by the end of a year’s treatment, but FBT proved to be superior at 6- and 12-month follow-up. For instance, a year after end of treatment, 18 per cent of the AFT group had been hospitalised, as opposed to 4 per cent in the FBT group. And of those who had achieved full remission at end of treatment, 40 per cent of the AFT participants relapsed, against 10 per cent of the FBT participants.
Four years after end of treatment, among 79 adolescents who had been symptom-free a year after completing either FBT or AFT, only one in each group had a relapse. Le Grange, D., Lock, J., Accurso, E. C., Agras, W. S., Darcy, A., Forsberg, S., Bryson, S. W., ‘Relapse From Remission at Two- to Four-Year Follow-Up in Two Treatments for Adolescent Anorexia Nervosa’ in Journal of the American Academy of Child & Adolescent Psychiatry (25 August 2014) http://tinyurl.com/ks3jgjt
Note that this talking therapy (AFT) is quite different from talking therapies where the focus is for insights into childhood traumas. With AFT, ‘Patients learn to identify and define their emotions, and later, to tolerate affective states rather than numbing themselves with starvation. The therapist actively encourages the patient to stop dieting and to gain weight, and asks the patient to accept responsibility for food related issues’. Parents are only involved to ‘assess parental functioning, advocate for the patient’s developmental needs, and update parents on progress’.
[xliii] Interpersonal therapy Susan Cowden (2015) https://www.verywell.com/interpersonal-therapy-p2-1138355
[xliv] Glenn Waller (2016), ‘Recent advances in psychological therapies for eating disorders’ F1000 Research http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4841195/
[xlv] Parents report huge benefits from learning DBT skills (dialectic behaviour therapy) along with their children at UCSD’s intensive family treatment http://www.aroundthedinnertable.org/post/ucsd-our-intensive-family-therapy-week-6316129
[xlvi] Junior MARSIPAN: Management of Really Sick Patients under 18 with Anorexia Nervosa, report from the Junior MARSIPAN group, College Report CR168 (January 2012), Royal College of Psychiatrists London, http://tinyurl.com/ku79htm
[xlvii] For suggestions on questions to ask a treatment provider in order to work out if they’re for you, you could also have a look at the video ‘Important questions for eating disorder clinicians’ by C & M Productions: http://tinyurl.com/pfxol34
[xlviii] Dr Sarah Ravin’s blog ‘Red Flags: How to Spot Ineffective Eating Disorder Treatment’ is a must-read if you’re on the hunt for treatment, or if you’re worried about your current therapist. http://www.blog.drsarahravin.com/eating-disorders/red-flags-how-to-spot-ineffective-eating-disorder-treatment.
[xlix] 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.
[l] List of certified FBT therapists who do telemedicine: anorexiafamily.com/certified-fbt-therapists-family-based-treatment-who-skype
[li] The Maudsley hospital in south London provides a national eating disorders service (outpatient and daypatient) for children and adolescents https://www.national.slam.nhs.uk/services/camhs/camhs-eatingdisorders/. In north London, Great Ormond Street Hospital for Children has a 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.
[liii] 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.
[liv] Harriet Brown’s article on her DIY approach to treatment: ‘How to Put Together, and Work With, a Non-Maudsley Team’: http://maudsleyparents.org/workingwithanonmaudsleyteam.html
[lv] 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
[lvi] 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
[lvii] Risk assessment, physical examination and more on ‘Junior Marsipan: management of really sick patients under 18 with anorexia nervosa’. CR168, Royal college of psychiatrists, 2012. http://www.rcpsych.ac.uk/usefulresources/publications/collegereports/cr/cr168.aspx
[lviii] 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).
[lx] 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
[lxi] Waller, G., Cordery, H., Costorphine, E., Hinrichsen, H., Lawson, R., Mountford, V., Russel, K. (2007) Cognitive Behavioral Therapy for Eating Disorders: Comprehensive Treatment Guide (http://amzn.to/1Pwspuh)
[lxii] Amador, X., I am not sick and I don’t need help! How to Help Someone with Mental Illness Accept Treatment (http://amzn.to/WIW1en). Check out 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
[lxiii] 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).
[lxvi] Odet Beauvoisin, certified advanced practitioner of EFT www.eftkinesiology.co.uk She can treat by video call (Skype). There is a lot of research on EFT, including some randomised controlled studies (http://www.eftuniverse.com/research-and-studies/eft-research#review). I like how the technique dovetails with mindfulness and connection to physical sensations, and how even though it looks weird, there’s no bullshit.