Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

Curly, if possible try to speak to them out of earshot of your daughter. Then you can be much more forceful and tell them that you cannot keep her safe at home without having to worry that if they send her home, she has heard you say that.

I think you need to tell them that she has autism (I’m not sure if she has actually but I think you are waiting for an assessment) and that they need to use the PEACE pathway. She needs a kinder gentler approach, which unfortunately is also slower. But I think it leads to the best long-term outcome for children like ours.
You may have to repeat yourself over and over again. Tell them that you know that there are NHS places in private ED units for complex cases and that you would like them to explore this option for your daughter. It will probably have to go to a senior meeting for a decision to be taken, but I think your daughter should be a priority given everything that you have going on and the fact that she’s out of education, et cetera. make sure they know that you have been doing this on your own for two years and that nothing has changed and things are now escalating.
Refusing to take her home in earshot of her is likely to have a detrimental effect on her so if possible, try to have these conversations away from her. Or if that is not possible, write down what you want to say and give it to the doctor. I believe that if you’re not happy with what they tell you, you can ask for a second opinion.

thanks @NanFlanders Just had a phone call with the ED team to discuss things. Waiting for the MH team in a&e too.

This may be a turning point Curly, don’t lose hope. X

It’s so hard for them, you can see why being admitted might be attractive.

so sorry this terrible disorder has been with you for so long @Curlyhairedassasin sending my very best wishes to you both xxx

@Mummyoflittledragon I have been thinking of you and dd.

I’m just trying to keep afloat as lots going on and dd has no awareness that she still isn’t able to have complete independence around food and snacks.
Tried to contact DD’s psychologist but she’s not got back to me and I really need to give her the heads up about what’s been going on with dd before her appt this week.

Got seen by the MH team where she disclosed suicidal thoughts. They are referring us to the MH crisis team who cannot help around the ED. Spoke to ED team as no support around that fact that she is nil by mouth and was advised to bring her back after every 24h of not eating to a&e until she becomes ill enough for an admission to the paeds ward. Apparently it's not that easy to get a bed in an ED unit and it doesn't look like an option for us at all.

I am just totally broken. I came here because she is not eating and they are sending us home knowing she is underweight and not eating at all.

@Curlyhairedassasin I am so sorry that you find yourself in this hell. Keep on with the A&E visits. At every one, reiterate that you cannot keep her safe. That she is suicidal and not eating. It isn't easy to get a bed in a unit, but it's not impossible, and the sooner you get on a waiting list, the sooner you'll get to the top of it. Ask what the criteria are for a Tier 4 referral. Call the CAMHS crisis line whenever you have a crisis. And try to look after yourself. Can anyone watch your DD while you go for a walk round the park with a friend? Talk to friends, family, Beat, the Samaritans. Hang on in there, lovely.

Curly, I’m so sorry. Do you mind saying what area you are in. If it’s London, maybe I can help. Have you ever emailed Jenny Langley? I wonder if she could suggest someone to contact.
i’m not surprised at this response as it is exactly what happened to us

North West.

Curly I’m so sorry that you and your dd were turned away. Thinking of you and hoping you will be able to get your dd to eat today. Have you tried to talk to her? I appreciate you don’t want another incident of being hurt again after the last time.

Idk if you read what I wrote upthread. My dd is probably autistic and this approach works best for her, to coax her. It feels really manipulative and controlling to me. But straight talking facts feels manipulative and controlling to her.

@Cantfindthewordsddstruggling
I hope you manage to progress things too and I have also been thinking about you and your dd. My dd is eating but she’s not doing well mentally and I can feel she won’t hold out much longer if things don’t change. She’s eating under duress since the incident at the start of half term. She’s really falling to pieces and is saying she doesn’t like school anymore.

I had a zoom meeting with school at lunch with the safeguarding/pastoral lead about things and they’re finally taking her situation seriously. The teacher told me she has been tearful all day and dd texted me to say she also had an argument with a girl at school, which is most unlike her.

They are going to address the situation with a boy, who has been negging her because she wouldn’t go out with him. He now has a girlfriend and he’s really upped the anti. Teachers have been noticing the way he looks at her and his snide comments in class. They are going to have a conversation with him and if he continues after that, it will lead to sanctions, which won’t look good seeing as this is 6th form. We are aware dd may have said some stuff as her brain hasn’t been working well since she went back after Christmas.

Well, we managed a tiny dinner at home. better than nothing. will see if she manages supper. MH Crisis team called and said it's not really a case for them and won't see us. We are having an ED clinic appointment tomorrow instead.

@Mummyoflittledragon DD is autistic too (probs, awaiting assessment). No coaxing etc will work. It's impossible to manipulate her but will re-read your post in case there is anything I haven't tried yet.

I get you have more experience of this than me and hope things look up tomorrow for you both.

Good luck at the appointment today Curly

I'm so sorry for all you are going through.
I'm at the start of this grim journey with my DD and I've been reading and trying to learn but not had much to say so been lurking here. Just wanted to send you very best wishes for today, Curlyhairedassassin.

@Curlyhairedassasin I hope you both have a better day today. If you find yourself beck in A&E, you can refuse to take her home if you feel you can’t keep her safe at home. We’ve had to do that to get more EDS support.

i expect we”ll do it again soon as she’s eating less 500c a day. It’s a bit different though because she’s in adult services and we have previously written with our concerns about the ED team’s decision-making. I don’t want to do it but ultimately my job is to keep her safe. The MEED guidelines are quite clear on red flags for risk to life: I find it helpful to refer to them.

She is refusing all breakfast and is hysterical. She attacked me, pulled my hair/head to the floor and kicked if like a football. Pulled a bunch of hair out. She is refusing now her meds too now (Olanzapine and Fluoxetine). Seeing the ED team around noon. I doubt they can do anything and we will probably be send our way with the advice to go to a&e if we are worried (who then will also send us away).

Curly, at your appointment today, I would plead for home visits until you get a place in an ED unit. Tell them about the violence on you and how your family needs home help. They should come in to prepare and eat with your DD. Again, try to make the case out of her earshot as she will be feeling huge embarrassment and shame for her actions.

Like you, I always got the sense that my DD desperately wanted someone to help her but she really struggled to engage with therapy/dietetics.

It is not unusual for kids with autism to be violent towards their family members when they are completely overwhelmed. What is not acceptable is the complete lack of support for your family

@Curlyhairedassasin You aren't safe. I know it's the last thing you want to do as a parent but can you call the police? They can be really good in these situations. And it will add to the evidence that she needs specialist care. You can also request she be assessed for a section under the Mental Health Act: https://www.mind.org.uk/information-support/legal-rights/nearest-relative/sectioning-and-guardianships/#:~:text=Yes.,they%20must%20give%20written%20reasons.

@NanFlanders we had the police out once. Would want a repeat of that. I will check the link from Mind.

@Shanghai101 We tried not too long ago meal support at home from the ED team but she wouldn't eat with them either.

@Curlyhairedassasin Sorry you had a negative experience with the police - they were excellent with our DD, but I guess it depends on the officer. Let the ED team know you are not safe though - don't hold back. This is more than you can possibly be expected to deal with.

@Curlyhairedassasin
Jenny Langley has provided links to these amazing charities in the North of England. Please contact them if you haven’t already because, as Nan Flanders said above, this is more than anyone could cope with on their own.

EDNE Home - Eating Distress North East
SEED Home - SEED | Eating Disorders Support Service %
TEDS Talking Eating Disorders (TEDs)- Eating Disorder Support Group

I know you have had so many negative experiences with services and you’re not getting support from your husband, but please please please know that we are all here for you and please don’t lose hope.

@Curlyhairedassasin
Jenny Langley has also sent me documents with information on:

Medical risk
Going to A&E
Responding to suicidal ideation.
Medication.
She has also attached the capsule around communicating with Caree teams using a motivational style and without reaching preaching confidentiality rights. She recommends highlighting irrelevant sections and using the same approach with school, i.e. those who have a duty of care to keep your loved ones safe.

I can’t find a way to attach these documents on Mumsnet. I would be happy to share my email address with you in a post.Curly, if somebody could tell me how to delete ir as soon as you’ve read it as I’d rather my DD didn’t identify me!!

@Shanghai101 Just click on the three dots next to your name and report your own post. MNHQ are usually on it pretty quickly.

@Shanghai101 given the sensitive nature of the material posted and the fact you don’t want random weirdos emailing you I think I might be worth asking mumsnet if they would consider emailing the poster your email address. It’s worth a shot