To think we need to change how we treat Anorexia

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My dd has suffered from this disease since lockdown. It has had a catastrophic impact on her life. Part of the reason she has been ill for so long is that the traditional way of treatment relies on family therapy. My dd has autism and this style of approach with parents being in control just didn’t work for her and often doesn’t with autism. Research shows autism and Anorexia can often be linked. My DD’s Anorexia wasn’t picked apart and she wasn’t given any coping strategies that suited her or proper specialist support just FBT. CAMHS pulled back from FBT when it clearly wasn’t going to work but didn’t have any ideas of what else to do and just tried to make her focus on other things with the idea that real would make her suddenly decide to get well.🤔 No tools were given to do that .The anorexia got more and more imbedded . Because FBT is the default treatment they were too scared to take the bull by the horns and try anything else. Because beds in units were in very short supply she just ping ponged in and out of paed wards without specialist care and the disease was left to get more in control of her life. I saw so many other young people in the same situation with trauma and ptsd becoming common.

Under adult services she has tried a different style of treatment with some success. It’s hard though because she has been ill for so long. I don’t understand why it isn’t tried earlier under CAMHS.

In addition to this is the issue re how adult sufferers are accessing care. It’s shocking but the iller you get the less help you seem to get with some areas now discussing palliative care instead.I have added a link which explains the truly shocking state of play at the moment.

So AIBU in thinking the whole area needs a massive rethink starting with a look at the FBT or nothing approach for young children, links to autism and the shocking struggle to access treatment as adults?https://www.theguardian.com/commentisfree/2024/feb/25/illness-worsens-scandal-eating-disorder-treatment-england

So sorry to hear these stories. I fully received from anorexia so please know it is possible! But certainly not under nhs treatment. It was through a book written by Tabitha Farrar. Can’t remember the name but it was life changing. I have no issues around body image, eating or exercise now.

Thank you so much. I'll look into that. Appreciate it. Sounds positive hope it goes well.

Professor Kate Tchanturia is doing some interesting work on ASD and eating disorders

My eldest was diagnosed with anorexia back in 2018 I think at 14 years old.
We did the whole fbt and it didn't work for her either.
She's in her second year of uni, and has been under the adult services since 18, after camhs discharged her due to lack of engagement, and being able to maintain a lower end of normal weight despite many symptoms etc

Pretty sure she is also autistic, she pretty much fell apart when starting secondary school, leading to the anorexia in year 10.

Under the adult service, she was having an asd assessment but I don't know the outcome for that, she wouldn't tell me.
One thing that worked for her was that they didn't tell me a single thing unless they had no choice, and they always asked her if it was okay to share things with me.

She was transferred to the ED service where she goes to uni in Wales, and the difference has been huge. They've really helped her, she's closely monitored with weekly checks and frequent blood tests.
The adult service has done more for her than camhs ever did.

Now, I turned to fb support groups for support for myself and advice. They can be good however if you do have a child or young person for whom fbt doesn't work, you're then made to feel bad that you can't help your child, that fbt is the only thing that works, and the only thing they will advice on. If anyone dared to question it, they were basically jumped on and make you feel.like you're failing. You were told you weren't doing it right, that you had to fully focus on it despite having to work, or having to provide care of other siblings.

My daughter has that book and says it’s good.

I hear you. That so sounds like our story.FBT is like a cult, people are blocked from Facebook support groups if they don’t fully chant the FBT cry or dare to voice that it just isn’t working.

I think it causes trauma in some cases. It has in ours for both my husband, myself and my daughter.

FBT hasn’t worked for us either. 3 years in and recently diagnosed with ASD and on yet another Paediatric admission. I’m hoping that now she has the ASD diagnosis, the anorexia will be approached from a different angle.

I agree with this. Doesn’t just apply to anorexia but other mental health problems too.

I had chronic severe anorexia for 18 years from the age of 11. FBT actively made it worse, for everyone not just me. And CBT at best was uselessly frustrating. I think the problem with anorexia is that there is no single treatment that’s going to work for everyone. Anorexia is borne out of a complex mixture of life circumstances and genetics to a degree. Getting better really is trial and error. It is possible to fully recover though so there is hope. I never used to believe that on my bleakest days but life on the other side is much better now.

No I expect services to try other types of treatment instead of just sticking to a default treatment known to not be that great for the very section of society most likely to get Anorexia.

Its lazy and causes a massive drain on paediatric wards.

I agree with you. I think what @helpfulperson and I were trying to say is that some people do not really respond to any treatment for their anorexia or other mental health problems even with all the money and resources in the world. Just look at all the rich and famous who struggle with MH, ED and addiction etc.

Its a very hard thing to accept but not dissimilar to the fact that young, otherwise healthy people, do not always respond to eg chemotherapy. It’s all very sad.

But they won’t if oniy one style of treatment is tried for far too long leaving an ED to get imbedded. Many sufferers are not getting any treatment at all.

I’ve never heard of FBT. I had anorexia as a teen in the 90s when awareness and treatment was even worse than it is now. But reading about FBT now has made my blood run cold. I cannot begin to describe how detrimental it would have been in my family. If this really is the go to dogma then I find that terrifying.

This research article is quite interesting, it suggests that none of the treatments currently available to adults have brilliant success rates and no one knows which might work better for any individual - but shared decision making with patients so they maybe more motivated might improve outcomes.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7575018/

Now to me this sort of thing just seems incredibly obvious, there are 3 ways of dealing with anorexia as an adult and patients get to chose the one they think will work best for them. Why on earth wouldn't you give people the options?

I also think it's shocking that FBT is the only option for children and can't tell why this is the case . Ok so even in autistic patients it might currently have the best outcomes:
https://attwoodandgarnettevents.com/treatment-and-support-for-autistic-adolescents-with-anorexia-nervosa/
But if it's not working then there needs to be other things to try surely? It might be the most successful thing, but that doesn't mean it's going to work for everyone. So what do you try next? Why are there three options for adults and only one for children? The A in MANTRA stands for adults - but why isn't there an equivalent for children?

The withdrawing of care when they decide you're not helping yourself enough is just completely shocking:
Dr Daiva Barzdaitiene, who achieved brief notoriety when she wrote a starkly worded article in the newsletter of the Royal College of Psychiatrists, published in 2022. When it came to what she called “severe and complex eating disorders”, she warned against “harmful compassion” – and, as she saw it, the fact that “countless attempts to treat people who do not want to change take away resources from the people who have recently developed an eating disorder and could be helped”.
Suggesting people don't 'want' to change like it's a choice they're freely making. But really it sounds to me like it comes down to money, which is probably at the heart of all the issues. It's far cheaper to blame people for not being fixed and discharge them for not trying enough then it is to keep trying to help them. It really is shocking.

Yes it’s interesting I had Anorexia in the 80s and got better much quicker than my daughter who had FBT the last few years. I would have completely freaked out if I’d had to do FBT and I know there is no way my dad would have coped with it anyway.

I know I don’t get why there is no MANTRA equivalent for children . Iv my dd had switched to MANTRA a year after FBT not working I am convinced the outcome would have been better. Instead they withdrew FBT and left her with nothing meanwhile she pingponged in and out of paeds( along with others like her). It’s ludicrous.

@takemeawayagain You’re so right. I was told that if my child didn’t want to be forcefully tube fed and they didn’t think it was in her best interests to continue, they would discharge her home to die.
As if she’s choosing not to want it. She’s 15, I honestly despair sometimes.

I have anorexia and am currently under an adult eating disorder client with the NHS. In my experience they don't really seem to have a clue. They almost ignore all emotional issues and focus solely on weight and food. I know that medical status obviously plays a key role but it needs to be considered in tandem with emotional state.
My therapy has been so disjointed, I've been under my clinic for over a year and I still haven't been given the therapeutic modality that I was told I would be and when I ask questions I'm given no straight answers.
I feel as though I'm being given no support to increase my intake and simply get questioned on why I'm not following my meal plan. If I was able to follow a healthy meal plan I wouldn't need to be under the team in the first place!
I'm actually trying to consider a way to pay for private ED treatment as I feel that the standard 'treatment' is very rigid and not tailored enough to individual patients.
It's a difficult one and I'm honestly not sure I see full recovery in my future.
I truly hope your daughter gets the help she needs, you sound committed to getting the best for her and that will go a long way towards helping her attain recovery.

SM plays a big part .

This is correct.

Anorexia is a biological illness, it is triggered in people genetically predisposed to it by weight loss.

My dd also started restricting food during lockdown and had full blown anorexia within a few months. I also suspect she is autistic.

I would say FBT saved her life, it is brutal and we went through hell but once it was established it meant her weight slowly increased and all of the anorexic cognitions slowly disappeared.

She's never engaged with therapy so food has been her only medicine.

I strongly dispute there has to be a reason or trauma for someone to develop anorexia, all it takes is genetics and weight loss - that is it.

It is a horrific illness and I agree more funding and research are needed but I don't agree that FBT doesn't work. It's the only evidence based treatment and it does work for many children.

@Girliefriendlikespuppies I totally agree with you - anorexia is a biological brain disease caused by weight loss in genetically vulnerable individuals. I had it myself at age 13, now fully recovered; my daughter was 12 times more likely to suffer also. Which she did, very badly, for 7 years and is just coming out the other side.

Food and weight restoration is the only cure. It's not caused by a wish for control or trauma, it's a brain disease as much as Alzheimer's caused by the effect of starvation on the brain. Family based therapy was useless for us - my daughter is also autistic. Only food and weight restoration helped.

CAMHS set their weight restoration goals far too low, causing the illness to go on longer in my opinion.

A FBT approach is working here for our anorexic, likely autistic, dd. So far, anyway. I do agree that the approach should be tailored to the individual. Our experience is that it’s very hard to access ANY treatment whatsoever, let alone a choice of treatment approaches.

I’m also recovered from anorexia, and also autistic. For me, addressing the food was important and looking for a root cause unhelpful. I agree that it is a brain disease. I don’t feel that weight restoration is the only answer, people often develop other ED’s, cycle between them, etc, even at normal weights. But a regular eating pattern and sufficient calories is essential.

It absolutely is the only treatment with a decent evidence base. However, it’s often done badly and as an excuse to parent blame and give parents the entire responsibility without adequate support. That really does impact relationships and cause more problems.

I totally disagree. My DD’s Anorexia was caused by undiagnosed ASC and ADHD , very low self esteem and poor coping skills. Without her self esteem improving, work on coping strategies alongside therapy to unpick her Ed she did not make progress and was continuously locked into hospital admissions. She was weight restored several times often to very good weights above her original size.

FBT does not work for many children. There is so little research on it and it does not have a 100% success rate. There is no research or work being done on anything else. Some families are barely doing it. I strongly suspect many doing it get well in spite of it and just go to FBT sessions because they have to and are given nothing else. We gave it 3 years. It did NOT work. Under adult services we see others who have transferred because it didn’t work. I see those parents online too.

I don’t have an issue with FBT being tried first but after a year of it not working and psychs saying patients need more control something else needs to be tried. Keeping patients locked in to an endless cycle of unsuccessful FBT or nothing is hugely damaging and allows anorexia to get entrenched. That is not ok.

If you’ve met one person with autism you’ve met one. Food restoration absolutely does not help my daughter. She has been weight restored and then some countless times. The bar was not set too low, far from it. We have been told by psychs that she needs to be in control and driving things to recover,numbers are huge for her. She has made far more progress in control and driving things with a proper treatment program and therapy that is not FBT driven.

One size does not fit all and this needs to be recognised far earlier. If it was adult services wouldn’t be under so much pressure.