Helping you free your child of an eating disorder

NICE guidelines eating disorders young people

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

Best eating disorder treatment in brief:

What are NICE guidelines?

NICE (National Institute for Clinical Evidence) reviews the best evidence worldwide. Its recommendations are more or less mandatory in England’s National Health Service. Also in Wales and Northern Ireland

What is the NICE guidance for eating disorders in children and young people?

NICE recommends that children and teens are treated with a family-based therapy approach for anorexia and bulimia. CBT (Cognitive Behavioural Therapy) is the next choice for anorexia and bulimia, and the main treatment for binge-eating disorder.

I’m going to tell you about the treatments that are now recommended in England, Wales and Northern Ireland. You may not elsewhere, and you may not care about what goes on there. (A while back I got a Scottish politician very hot under the collar by talking about the good stuff in England. )

Yet what follows is about world-wide research and the painstaking work of sifting through gazillion hours of evidence. What follows may make all the difference to you if:

  • you want your child to get the best treatment for an eating disorder, or
  • you’re a clinician wanting to deliver the best treatments

Here’s what this is about. In May 2017, the national health service (NHS) in England, Wales and Northern Ireland published the very latest NICE guideline for the recognition and treatment of eating disorders. (NICE is the National Institute for Clinical Excellence.) In this post I’ll concentrate on the recommendations for children and adolescents.

Update: Some years later, Scotland took the NICE guidance and altered it to add to its SIGN guidelines.

Why should you care about a (mostly) English recommendation?

Professional associations all over the world have been recommending family-based treatment and similar approaches for quite a while now.

Yet so far, those providing these treatments have been few and far between.

Parents all over the world struggle to get hold of a therapist who practices a family-based approach. Therapists who treat teens often don’t know what’s involved in family-based treatment and haven’t read the manual. They’re not up to date with the research. If they do offer family therapy, it may not be the kind of family therapy that’s needed to treat an eating disorder.

Therapists: potential clients are desperately looking for the therapies I describe here.

England’s NICE guideline is relevant to us anywhere in the world because it’s the outcome of the most recent and thorough review of evidence that comes from research conducted world-wide. If your country gathered its experts right now to examine all the research that’s been done, it would come to a very similar conclusion.

So what’s the recommendation for the treatment of anorexia in young people?

For under-18s suffering from anorexia the top treatment NICE recommends is "anorexia-nervosa-focused family therapy for children and young people (FT-AN)"

That’s a family therapy that is focused on anorexia, as opposed to a more general form of family therapy where the focus might be on improving how family members interact with each other. What is key, in FT-AN, is that parents are central to delivering the treatment.

Family-based treatment (FBT) is one form of anorexia-nervosa-focused family therapy (see the manual and the parents’ book by Janes Lock and Daniel Le Grange below). In the US it’s sometimes called ‘The Maudsley Method’. There are other forms, such as the family therapy that has been practiced in South London and Maudsley within the Child and Adolescent service, headed by Ivan Eisler and Mima Simic (their service manual is here). And there are more variants, currently being studied in the US, Canada, Australia and more.

This website, my book and videos are all about anorexia-nervosa-focused family therapy. My materials are regularly recommended by the top specialists in this type of family therapy.

Eva Musby paperback and ebook: Anorexia and other eating disorders
Help your teenager beat an eating disorder, Lock & Le Grange
FBT Treatment manual for anorexia nervosa. Lock & Le Grange

If you are confused about different forms of family therapy, and which are suitable for treating anorexia, I explain more here.

Focus on weight gain for anorexia

NICE makes it clear that weight gain comes first:

"When treating anorexia nervosa, be aware that:

  • helping people to reach a healthy body weight or BMI for their age is a key goal 
  • weight gain is key in supporting other psychological, physical and quality of life changes that are needed for improvement or recovery."

Too many young people are stagnating at a low weight, because their therapist believes that psychological work is key. If this is your situation, you can use this NICE guideline to challenge your therapist’s approach. Remember that the NICE guideline comes as a result of a massive review of the scientific literature.

* More from me: Weight restoration: why and how much weight gain *

When anorexia-focused family therapy doesn’t work

Anorexia-nervosa-focused family therapy is the number one option but it will not work for everyone — we know this from the published studies and from experience. The NICE guideline says that if for some reason it is "unacceptable, contraindicated or ineffective", the next two approaches to chose from are:

  • individual CBT-ED –that’s cognitive-behaviour therapy specifically for eating disorders
  • or adolescent-focused psychotherapy for anorexia nervosa (AFP-AN)

I say more on CBT-ED in Chapter 12 of my book, which you can read in its entirety here. And I have two posts for you on adolescent-focused therapy. I explain how it compares to FBT here, and I explain what it is here.

Recommended treatment for bulimia?

The Nice guideline for the treatment of bulimia in under-18s is the same as the first two preferred options for anorexia:

  •  bulimia-nervosa-focused family therapy (FT-BN)
  • and if that is "unacceptable, contraindicated or ineffective", consider individual eating-disorder-focused cognitive behavioural therapy (CBT-ED)
Treating bulimia in adolescents . Lock & Le Grange

Family therapy for bulimia is similar to family therapy for anorexia, except that right from the start of treatment there’s more scope for dialogue and cooperation with the sufferer.

CBT for eating disorders - therapists' manual - Waller
CBT-T : ten session Brief therapy for non-underweight eating disorder patients - Waller et al
Fairburn: CBT for eating disorders - therapists' manual
CBT for adolescent eating disorders - Ricardo Dalle Grave & Simona Calugi - Therapists' manual
CBT for adolescent eating disorders - Ricardo Dalle Grave & Simona Calugi - Book for parents
Self-help: beating your eating disorder, by Waller
Self-help book by Fairburn: overcoming binge eating

Treating Binge eating disorder

There’s not much research on binge eating disorder in youngsters, and I guess this is why NICE’s recommendations are the same, whatever the person’s age. Given all the websites that promise binge-eaters a quick route to weight loss, it’s heartening that the NICE guidelines say that "weight loss is not a therapy target in itself".

First, NICE makes a major point: "weight loss is not a therapy target in itself".

NICE recommends a cognitive-behavioural approach in the following forms:

  • The first thing to try is a ‘guided self-help programme‘.
    There may be ‘brief supportive sessions’ to help the person follow the programme.
  • If this proves ‘unacceptable, contraindicated, or ineffective after 4 weeks’, then group CBT-ED is next in line.
  • If the groups are not available or the person declines it, then we’re into individual CBT-ED therapy.

How about treating OSFED?

OSFED is ‘other specified feeding and eating disorders’. When you catch your child’s eating disorder early, there may not be a diagnosis of anorexia because anorexia requires a ‘significantly low body weight’. Another diagnostic criteria that may be absent is a disturbance in how they experience their body shape. What professionals may then do is diagnose OSFED.
For OSFED, the NICE guideline says: ‘consider using the treatments for the eating disorder it most closely resembles‘.

In other words, you treat for anorexia even if your child doesn’t (yet) tick all the boxes for anorexia. Likewise with bulimia or binge-eating disorder.

How about treating ARFID?

Shockingly, the NICE guidelines don’t cover the treatment of ARFID. More from me on ARFID here.

More good examples on treating young people

The NICE guideline tells us which treatments should be delivered. For some of the ‘how’ England produced the Access and Waiting Time standard for children and young people with an eating disorder (2015). I think it’s exemplary and I describe it here.

What about the next age group?

NICE guidelines for eating disorders - when you're 18

NICE’s recommendation for anorexia-nervosa focused family therapy only applies to under-18s. This is daft, as the research on family-based approaches has included 18-year-olds. So really, if your child is 18, family therapy is just as suitable, according to the science, as if he or she is 17.

What NICE has factored in is England’s health service set-up. You see, in most health trusts, you move to adult services as you turn 18. NICE combines evidence with what is practical and value for money. I imagine the committee did not want to force adult services to learn anorexia-nervosa-focused family therapy ‘just’ 18-year olds. And it presumably couldn’t justify using it on 19-year olds and upwards, because of the paucity of research.

However, many parents and therapists will tell you that the principles of family therapy work very well in older age groups, and there’s some evidence for this in people up to 25. More on this here.

In England and not getting NICE treatment?

Your health provider has to give you access NICE-concordant treatment if that’s your wish: "Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it." If you’re not given access to FT-AN for anorexia, FT-BN for bulimia, ask why, request it, speak to the head of the mental health unit, to the head of the trust, or their complaints official, or their children’s commissioner (for CAMHS) or whoever the commissioner is for adult mental health.

OK, so that’s England. How about the rest of the world?

Best eating disorder treatment

England’s NICE guideline is totally in line with the best recommendations made by professional associations elsewhere in the world in the last few years. NICE is more recent, and more definite.

Here’s what the American Psychiatric Association recommended in their Practice Guideline in 2010:

"For children and adolescents, the evidence indicates that family treatment is the most effective intervention. In methods modeled after the Maudsley approach, families become actively involved, in a blame-free atmosphere, in helping patients eat more and resist compulsive exercising and purging."

Also from the US: the National Institute of Mental Health writes on its website:

"Typical treatment goals include restoring adequate nutrition, bringing weight to a healthy level, reducing excessive exercise, and stopping binging and purging behaviors. Specific forms of psychotherapy, or talk therapy—including a family-based therapy called the Maudsley approach and cognitive behavioral approaches—have been shown to be useful for treating specific eating disorders."

And the American Academy of Pediatrics wrote (2010)

"Family-based interventions, nevertheless, remain an effective and evidence-based treatment strategy for adolescent AN in both open trials and randomized controlled studies[ …] Unfortunately, family-based treatment by experienced providers is not available in all communities. Nevertheless, the essential principles of family-based treatment can still be encouraged by community providers in their work with patients and families."

Here’s a position statement from the Canadian Paediatric Society (2016):

“The evidence to date indicates that Family-Based Treatment (FBT) is the most effective treatment for children and teenagers with anorexia. A key component of the FBT model is that the parents are given the responsibility to return their child to physical health and ensure full weight restoration.”

Here’s from the Royal Australian and New Zealand College of Psychiatrists: Clinical practice guidelines for the treatment of eating disorders (2014):

"There is a general consensus that FBT is now the first-line treatment for adolescents with anorexia nervosa who are aged less than 19 years and have a duration of illness of less than three years."

Northern Ireland, Wales and Scotland — that’s where I am — generally follow NICE guidelines. Scotland got a head start a while back when got therapists in every Scottish health board trained in FBT. On the whole, FBT is what is being delivered, but it’s not happening everywhere and there are no written standards. Hopefully the NICE guidelines will bring improvements where improvements are needed.

Do get in touch if you’d like to share information from national or professional associations in other countries.

* Go to: Family therapy for eating disorders: what is FBT/Maudsley and what else is recommended? *

* Go to: Chapter 12 of my book: Which eating disorder treatments work? *

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

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