What’s the best eating disorder treatment for children and young people? The UK’s NICE guidelines

Best eating disorder treatment for your child or teen:

I'm going to tell you about the eating disorder treatments that are recommended in the UK, according to the NICE guidelines. That way you know what to expect, and also what to demand or complain about if the guidelines are not being followed.

This page is about children and adolescents up to and including 17 years old. NICE has different recommendations for 18+ adults, which I describe here.

NICE (National Institute for Clinical Evidence) reviews the best evidence worldwide. NHS services in England and Wales follow its guidance. Northern Ireland and Scotland base their standards on it. Scotland took the NICE guidance and altered it to add to its SIGN guidelines.

In brief: recommended eating disorder treatments for children and young people

NICE recommends that children and teens are treated with a family-based therapy approach for anorexia and bulimia. It calls these FT-AN and FT-BN (for Anorexia/Bulimia-Focused Family Therapy). Some call it Family-Based Treatment (FBT). My resources are in line with those family-based approaches.

CBT-E (Cognitive Behavioural Therapy) is the next choice for anorexia and bulimia, and the main treatment for binge-eating disorder. I tell you more about CBT for eating disorders here.

And at the same level as CBT in the recommendations, is Adolescent-Focused Therapy (AFT-AN). I tell you more about it here.

Why NICE matters: evidence rather than opinion

I've been following the story of a 15-year old with anorexia. The parents wanted access to family-based treatment, as it's the approach most supported by evidence. It wasn't available locally so the parents homed in on a prestigious private clinic they could barely afford. It didn't offer family-based treatment, though. The clinic's expert said, "I don't do family therapy. I don't believe in forcing anyone to eat". Which indicates poor knowledge of the approach. So the girl got weekly individual therapy. The mother, who had previously supported her daughter to gain several kilos, reluctantly did as she was told and let go of her involvement with meals. Week after expensive week the expert worked on therapeutic alliance, motivation, self-responsibility, and negotiated tiny weight gains. The girl lost all the weight her parents had helped her gain, and was eventually rushed into hospital for medical stabilisation.

This sad story ends well. The family got access to a competent NHS eating disorder service delivering family-based treatment, and the girl got well.

I'm telling you this story to illustrate the need for professionals to follow evidence, as opposed to opinion.

As Glenn Waller quips:

‘There's a lot of evidence that evidence is better than opinion, but a lot of opinion that opinion is better than evidence.’

It is hard for professionals to stay up to date with the research. This is where the NICE guidelines come in.

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.

There are differences in the meaning of FT-AN and Family-Based Treatment (FBT). I explain them here. But they shouldn't matter to you. The competence of your clinicians will make a far greater difference. I tend to refer to all this as a 'family-based approach' and it's what my resources are all about, without obsessing about differences. That seems OK, as my materials are regularly recommended by the top eating-disorder specialists worldwide.

What will make an enormous difference is if the family therapy you get is not the eating-disorder kind. If a therapist is looking for problems in your parenting, rather than recruiting you as a wonderful resource, you're missing out on the recommended treatment. I explain differences 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, use this NICE guideline to challenge your therapist's approach. Weight restoration really matters. Without it, you will not see recovery. 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 (AFT-AN)

I say more on CBT-ED 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)

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.

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 this:

"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). While COVID caused this standard to fall down, it's still a really good document and I describe it here.

What other standards are there for my child's treatment?

NICE isn't the only source or standards.

See my page on the Access and Waiting Time Standard for Children and Young People with an Eating Disorder. Commissioning Guide. The bit that might be most useful to you is that under-18s must access treatment within one week (for 'urgent' cases) or maximum our weeks (for 'routine' cases. Since the COVID lockdowns, these standards have slipped dreadfully, but you could still refer to them in a complaint. They also required NHS Trusts to allow you to self-refer — bypassing a GP who might be failing to diagnose or to recognise the urgency of to refer.

The Medical emergencies in eating disorders (MEED) report is another standard that will help you get competent care when your child is very ill.

* See my page on England for this and more of the standards and support to expect *

What about the 18+ age group?

NICE's recommendation for anorexia-nervosa focused family therapy only applies to under-18s. This is daft, as the research on family-based approaches includes 18-year-olds. So really, if your child is 18, the scientific position is that family therapy is just as suitable 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 doesn't just recommend treatments that have the best evidence: it also takes into account 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' for 18-year olds.

And it presumably couldn't justify using it on 19-year olds and upwards, because of the paucity of research.

Many parents and therapists will tell you that the principles of family therapy work very well in older age groups. There's a little bit of research (not enough to be taken up by NICE) on 17-25 year-olds, indicating this is a hopeful avenue. More on a family-based approach for this age group here.

Actually, there are good eating disorder treatments for adults (not in the NICE guidelines) that use some of the best principles of adolescent treatment.

What else matters in the NICE guidelines?

NICE doesn't just recommend treatments. There are sections on waiting times, on supporting carers, on treating co-occurring menta health disorders, on the competence of the professionals delivering treatment, and on whether they should follow manuals to the letter. I say more on all this on my page on the NICE guidelines as they relate to adults.

In England and not getting NICE treatment?

Your health provider has to give you access NICE-concordant treatment if that's your wish. From NICE:

"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. I guide you on your rights and on complaining here.

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

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 and Wales generally follow NICE guidelines. Scotland too, though it altered NICE to add to its own SIGN guidelines. Scotland got a head start a while back when got therapists in every Scottish health board trained in FBT.

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

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* Go to: Family therapy for eating disorders: what is FBT / Maudsley / FT-AN? *

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

* Go to: Adults or young adults: treatment for a restrictive eating disorder *

* Go to: Young adults with anorexia: FBT-TAY family-based treatment for 17-25 year olds *

* Go to: Recommended adult eating disorder treatments: the UK's NICE guidelines *

* Go to: Eating disorders in England (and tips for Wales, Northern Ireland and Scotland) *

* Go to: The NICE guidelines *