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

[Curlyhairedassasin]

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

@SupportWantedPlease sorry to hear that you are all going through this. The manner in which your DD is slipping into AN is very much how it was for us. Mine was diagnosed atypical for a long time as she convinced the team that body image was not a driving factor, when it was very much a factor.
The advice we were given then, and it’s the same advice now, was to find things that she wants more than the ED. So if PE is very important to her then she has to increase her intake. Likewise going out with friends etc. The sooner you can turn this around the better but unfortunately we weren’t able to do that without intensive treatment.

@SupportWantedPlease I was sorry to hear how poorly your DD is. I'm sure she (or the AN) doesn't want lunchtime supervision, but it is absolutely crucial that the calorie deficit is overturned, as it is the starvation itself that can intensify anorexic cognitions. I'd say, if she loses weight this week, then you are going to start supervised lunches. Hang on in there - I'm sure you are still reeling from the diagnosis, but the best chance of recovery in the community is if you can stop this sliding now. Best wishes.

Hello @SupportWantedPlease sorry you find yourself here but hope it's helpful.

I know some schools are able to offer supervised meal or snack support, unfortunately ours wasn't able to do this. It was probably a blessing in disguise as my dd was very talented at discarding / hiding / 'pouching' food so she didn't have to eat it, and it was hard to spot even for us where we watched her 100% of the time while she ate. The way our school was most helpful was in terms of flexibility with attendance, she was off completely for a few months at the start, then went for mornings only for another few months, and now she is there full time but comes home for lunch everyday. It's been a gradually improving situation in terms of her attendance, in the early days she found a whole week hard going and to be honest she was so unwell she wasn't capable of learning at that time. The head of year has met with me and my dd regularly to check in with how things have been going, and they have been open to suggestions about how they support her.

My dd is very concerned with not appearing to be different from others, so she has turned down some supports they have offered like a quiet space to take a break, attending a ND girls group or having small group study time. I've found that quite frustrating to be honest because I think it would help, but she obviously has to feel comfortable and it's her choice around this at the end of the day.

In the earliest days my dd wouldn't / couldn't admit there was a problem with eating (she is a little better at this now) and so any support offered around her feelings related to eating was rejected too, and she was quite vocal about her feeling that we were just making a big deal out of nothing.

Hope the meeting goes well. It's hard to know what's going to be useful at the start, and perhaps the support she and you need will change over time. Good luck x

just a little update from us and if anyone has advice....

she went from 3 meals/snacks orally down to 2 in the last few days. She is extremely flat. Loads of self harming even though room and belongings have been strip searched, and they moved her to a different room too. She expresses suicidal thoughts (but has been for a long time - I think it's more a cry for help than anything else - not too worried about those). When we are not here, she has a nurse sitting next to her until she is asleep to keep her save (but still managed a substantial amount of cuts today - nobody knows quite how and whenThey are still not ready to refer to tier 4. Things are worse than 2 weeks ago when we came. I just feel so hopeless and really don't know what else to do/ask for. I think they want to wait if she ban turn it around but it's not happening. Anyone else been at that point? i really don't know what else to do and her her to eat more but we really cannot carry on like that. Sorry for all the self pity. I feel I was holding it together quite well until now (considering it all) but I am cracking up. On a positive note, I have been cleaned to work fully from the ward and don't have to go to the office anymore which is a big relief.

Sorry @Curlyhairedassasin I don’t have much of a suggestion. However you have a reference point. They said they were giving your dd 2 weeks to see if things would improve before referring your dd on to tier 4. You posted that on 9th. Idk when they said it to you. But 2 weeks is nearly up and your dd is restricting further. I would call your local PALS for advice today, and see what advice they can offer. They don’t just handle complaints btw so hopefully they can advise you on what to say.

For starters the paeds ward isn’t able to safeguard your dd as they don’t know how she’s been harming herself. The nurses may be wonderful but it is unlikely they have the training and resources to manage this properly. I would talk about safeguarding and what if. I think the fact the harming is superficial atm is irrelevant.

What risk assessment do they have in place for your dd?

@Curlyhairedassasin We've been there! 8 hospital admissions before they'd refer DD. Even DD (who hated the unit) says she wished she'd been referred when it became obvious she wasn't going to turn it around and then she wouldn't have needed to be in the EDU so long. I think @Mummyoflittledragon makes an excellent point: can you write to the team (cc'ing PALS and her consultant) saying that she 'is not safe in the paeds ward' as evidenced by the SH, and you 'cannot keep her safe at home'? Emphasise that she is getting worse not better in the ward, and that you know there are waiting lists so the sooner she is referred the better - if she does turn it around, then she can always be removed from the list.

@NanFlanders @Shedqueen@Shanghai101 I just wanted to update from my (slightly desperate) message 3 weeks ago to say -firstly thank you so much again for your replies that night and next morning, I was in pieces and had no one who understood where we were, so to hear from mums who really understood helped so so much. Secondly you were all right about everything - our experience has been very similar. For anyone reading this in future, it is terrifying and the hardest thing I’ve ever done is leaving her sobbing that first night (after driving two1/2 hours from the adult hospital in a secure ambulance complete with cell) but it is also the best thing that could have happened as she now has a real chance to get better. As you all said, the staff are really kind, and the hospital is very communicative. I have visited most days, and email or speak to them and her every day. She finally has the medication she had needed for months (which may have prevented her getting so bad in the first place) and overall she’s doing really really well. The tube was taken out as soon as she arrived, which we were not warned about either (no one here has a tube in permanently, they put in and out each day if used), but she ate orally for the first time in weeks after a few days, and this has continued. We also have been attending online training and bought the recommended books. Im living out of a suitcase - it’s a 5 hour round trip so I stay over a lot but seeing my lovely girl ‘come back’ is so worth it.
@NanFlanders I never got round to mesaging you any more questions as it was all such a whirlwind but knowing I could if I needed to was a massive help in itself, so thank you again.
@Curlyhairedassasin - I’m really sorry you are not getting the help you need for your daughter. I can imagine how upset and exhausted you must be. I think we must have been given the tier 4 bed so quickly because my daughter was so underweight (62% wfh when she was admitted via A&E and still under 65% when transferred to Sedu). I have only realised since reading this thread and logging her wfh on charts online, how dangerously ill she was, it wasn’t communicated at all by the GP/community teams. I hope you get the help for your daughter really soon.

@Curlyhairedassasin you are doing everything you can and have been for a long time. It is heartbreaking to read about the SH.
There must be such pressure on beds in the ED unit with others at a lower weight. Meanwhile, the ED becomes more entrenched. We’re told that early intervention is key yet the bar for treatment is so high.
@perrymason thanks for the update. It is so good to hear that meds have made a difference and that she is making progress. As hard as it is, please make time for yourself while she is in hospital as this is a long road but there is lots of hope for recovery.

@Shanghai101 I do wonder if she is less of a priority as WFH is relatively good at around 80%. I know there are many patient in ED units who are a lot lower. But she is only maintaining it as she is NG tube fed.

Curly when you say you strongly want your dd referred to a tier 4 bed what do they say? She needs specialist support and isn’t getting it 🤷‍♀️ I don’t know what the ED expect. It would be like a child with cancer being given the wrong meds time and time again and wondering why they’re getting sicker….

@Girliefriendlikespuppies They say it doesn't work like that. They say they will likely reject her due to her autism. They say the process is complicated - filling in loads of forms (as if I care) and then people funding the place will come to hospital to assess her and likely to say the ward needs to try first a few other things before the referral can progress, and that finding a bed may be hard and that the bed may be very far away and that the tier 4 setting will be very challenging for DD due to her complex medication a d that it is better to sort in the community care. Sigh.

complex presentation, not medication

@Girliefriendlikespuppies we experienced very similar to @Curlyhairedassasin whem our DD was so poorly. Without wanting to shock anyone her BMI was close to 12 (she turned 18 while on the waiting list) before she was a priority. They would have given her a bed then but we had lost all confidence in the unit’s ability to save her and she was so angry with them for not helping her and continuing to discharge her. . They tried to reassure me that they wouldn’t let her die but I didn’t trust them by that stage. The system is absolutely broken for so many of us.
@Curlyhairedassasin if she is maintaining on the ward, are they planning to keep her there indefinitely. Is she getting any therapy? It was essential to my DD’s recovery, even when at a low weight. I know from experience that they can make exceptions when they have to so please emphasise that she is ND (it doesn’t matter that you don’t have a diagnosis, your evidence should be enough).

Just saw your update Curly. They do say that people with autism are better supported in the community. Can they find her a private day unit in your region that they will fund. If such a unit exists, maybe push for that

@Shanghai101 I don't think there are say units round here. We are in the North West if anyone is knowledgeable.

And no, no therapy. They said they will refer her if no improvement but it just a palaver every week with the goalposts moving. I do think she will go to tier 4 at some point but its just getting dragged out. I cannot see her getting better on the ward in the absence of therapy. but then, I am also worried the unit may not be good for her. everybody who knows her thinks she will really struggle in such a setting.

Curly, if you haven’t done this already, can you ask for a meeting with the psychiatrist and tell them that you agree with them that she may struggle in an in-patient setting but that you cannot do it at home. Ask them if they can put her in a private day unit. They will know what is available in your region.
Tell them that the longer she is left without therapy the more entrenched the AN is becoming. She needs so much kindness and compassion and a lovely therapist to help her work through her feelings. She can do this, Curly, but she needs the therapy.

@Shanghai101 Never thought of that but will definitely raise it as an alternative.

Curly, compared with a couple of years ago there is much more awareness of the need for a different approach with autism. Hopefully, they can approve a plan shortly

I’m not entirely sure if this is close to you curly but worth a try https://www.penninecare.nhs.uk/ceds-north
Beat maybe able to sign post you to other services in your area.
i agree with others and you can’t keep her safe at home and the nurses are struggling to keep her safe too. Your dd has been struggling for so long, what will it take for them to realise that other options haven’t worked and meanwhile the an becomes more entrenched.

@Curlyhairedassasin I'm so frustrated on your behalf. Firstly, there are so many girls with AN who also have autism - I'd say the majority in my DD's unit. It a major risk factor. As for filling our forms - well, tough! That's their job! Also we are in the North West and I know of the Priory Altrincham where our DD was and Ancora House in Chester (though Ancora don't take people with NG tubes). If she can recover in a day patient unit (I think Alder Hey in Liverpool was trialling one). I hate how they keep moving the goal posts on you.

@perrymason Thanks so much for the update. Delighted that your DD is doing so well.

The forms thing makes it sound like they just can’t be bothered @Curlyhairedassasin I’d tell them to do it and I’d also want to see a copy of the referral to check it’s factually accurate when they send it. Does your dd have a diagnosis now? I think she was on the pathway? Where there any signs of autism prior to the anorexia?

Im so frustrated for you as well, it’s heartbreaking for you and your dd.

no, on the pathway still but showing a lot of signs and did so pre-anorexia too. It's definitely not an AN thing only. The AN is just another layer.

@Curlyhairedassasin I would make all of these good points, but I'd also do it in writing by email too, either as a summary of what you've spoken about or in advance, and do that every time . I work for the nhs and have been involved more and more recently in reviewing cases where something has gone wrong, and I think having things written by you that can't be disputed or mis documented in notes is useful. If there was any kind of future review the info would be there and undisputable. It's completely cynical but I think having a clear paper trail of these points may be more likely to get them to act, potentially to avoid future criticism.

hope that makes sense, I'm not saying anything will go wrong but I do think the system works in annoying ways, and my own experience working in services which are stretched to the max is that the squeaky wheel gets the oil. People who have family that communicate assertively, complain, raise things up to managing staff and higher get better outcomes for their loved on that those who don't.

I’d second the point about writing things down. My daughter has been admitted to a general hospital this week and it was helpful to be able to refer to my previous complaint about her treatment on the same ward when the same issue happened this time. Also being prepared to escalate to service manager and higher.

I recognise your frustration about moving goalposts @Curlyhairedassasin . It is best to be treated in the community but too often the intensive support needed isn't available leaving inpatient units as the only option. Day units would be great to explore if they are available. There’s none in the region we live in despite endless talk.