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Eating disorders

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Original poster

What does intensive support in the community look like?

16 replies

imip · 09/01/2022 07:35

Dd15 has has anorexia for 14 months. CAHMS failed to help us with very little intervention (a whole other thread!) and we somehow managed to support her alone putting weight on but we knew anorexic cognition still there. Last summer there was extensive self harm culminating in a dramatic suicide attempt - police involved. Dd has been in a tier 4 unit (not ED) and ED has come back dramatically. Technically still an inpatient but came home because of covid. Care may come (finally) from ED team in the community. Any idea what this would look like? How often we could expect someone to support us at home? She is very suicidal again so I she is likely to be sectioned, but I am wondering what the community alternatives are for very good support at home?

OP posts:

lljkk · 09/01/2022 07:37

So sorry to hear this. x
At very least she should see a health professional 2x/week (counselling).
There would be lots of working with you as a family, too, to design a supportive & monitoring strategy.

Original poster

imip · 09/01/2022 07:45

Thank-you. Do you think daily meal support is reasonable? This is so much cheaper than being an inpatient (she was exceptionally vulnerable to others when an inpatient - pretty complex situation)

OP posts:

lljkk · 09/01/2022 08:08

If she needs daily meal support they will want her in an institution.
They will be very short of resources & then there is covid... Easier to manage within institution

Original poster

imip · 09/01/2022 08:17

Ah, current institutions meal support has been poor and lead her to lose a dramatic amount of weight in a very short time. Being short of resources and having parents who looked like they could manage has been what lead to all of this. There are sadly very real threats to her life with going in again - it would be a different unit now. God it all seems so hopeless...

OP posts:

HeidiHaus · 09/01/2022 08:23

So sorry you are going through this, such a difficult and traumatic situation, we have had similar. I don't have specific advice about ED but if you use Facebook at all I really recommend the private group called Parenting Mental Health. Everyone parent there has lived experience, and the support/advice is invaluable.

lljkk · 09/01/2022 08:34

Heidi is spot on-- get support for yourself. This is important to support your DD and get yourself thru the challenges ahead - since you are so important to helping your DD. Support for yourself is something you can do a lot about.

Original poster

imip · 09/01/2022 09:18

The thing is don’t know what that support looks like? And I work in an allied area. I have other dc with disabilities. The best I can come up with is a cleaner... no family in the country.

OP posts:

lljkk · 09/01/2022 19:43

There are online chat groups, at very least. Other parents (probably a facebook group). Someone who can understand the challenges you're facing.

myrtleWilson · 09/01/2022 19:49

Hi @imip - am not sure if you've seen the ED teen thread - please do join us if you'd like?

My DD (now 18) was admitted to hospital several times but not to a tier 4 ward. Because she was nearing 18 CAMHS were really keen to do as much as they could before discharging her - we had
1x family therapy per week
1 x dietician call every fortnight
2/3 x meal support per week
3/4 x intensive home support around self harm per week
1 or 2 therapy calls for DD alone

We also used to ring CAMHS crisis line whenever we needed to - it took a while for us to do that but in reality we should have done it sooner

Original poster

imip · 10/01/2022 06:49

@HeidiHaus thanks, I have joined the FB group. I am on many already, but not with much inpatient experience. Due to SEN with my other Dc, I am already online with lots of support groups - I have even helped start a group myself online and in RL! We have done a lot to adjust to the needs of our family/support ourselves, but it is exhausting. I put so much of my energy into just remaining calm around her. As I always say, I am supported when I know dd is getting the right amount of support.

@myrtleWilson thank-you I have lurked in the thread in the past but I am not good with keeping up with threads. The type of support your mention here is the type of support she needs and I want to make sure it is achievable. Cheaper than an inpatient unit. She is very vulnerable to others in a unit, unfortunately.

We have rung the crisis line a few times, and as you say we should have done this sooner.

OP posts:

Marv1nGay3 · 14/01/2022 22:06

My D has been inpatient in an ED unit as well as a general acute Camhs unit. The general unit had no idea how to support someone with an ED which was quite shocking, really, considering the overlap between Eating Disorders and other MH conditions. I think intensive community care can include things like open access to hospital for NG feeds if needed, as well as the other things mentioned ( meal support, dietician etc). There are some intensive outpatient programmes such as the Maudsley and Ellern Mede ( although that is private). It’s a horrible illness- wishing you all the best.

Original poster

imip · 14/01/2022 22:44

Thank-you. Can I ask whether anyone has had home meal support? And what is a reasonable number of meal supports? I have children with other eating issues also due to ASD and I am really feeling broken with trying to meet everyone’s different needs.

The general camhs unit was very destructive for dd, definitely in terms of ED, she lost so much wait and went from 6 meals a day to be lucky if she had one.

OP posts:

myrtleWilson · 17/01/2022 19:43

Hi @Imip - as mentioned we had home meal support three times per week (although home during covid also meant via zoom or on phone). On the other thread I think only one or two other posters have mentioned home meal support so I'm not sure if it is used in some places more than others etc. We picked the meal that we felt DD struggled with/had the most potential to go sideways which was dinner so we had the support at the time we needed it most. It was useful for tips/techniques for us and yet I was also frustrated because DD always followed support workers directions & consequently I felt CAMHS never got a 'true' picture of mealtimes....

Original poster

imip · 19/01/2022 06:02

Thank-you. We should find out on Thursday. In the meantime, dd has lost two kilos in about a week and a half. She has been checked over medically in the past two days. Her sisters just want her in hospital do they do not witness her food refusal. I have no doubt she will be admitted to general peds ward tomorrow.

OP posts:

Bookridden · 21/01/2022 19:37

I am really sorry to read that you are all going through this, OP. The lack of support and funding for families going through this is terrible. Do you find your GP and local services supportive?

Original poster

imip · 24/01/2022 00:17

GP initially supportive but CAMHS fell very short. Slowly patching support together, but dd currently on about 500ml and 500 calories per day. It is not enough. Tomorrow we have a meeting to decide the plan. Over the weekend dd said she wanted to get better and finally ate a bit - but being a vegetarian, it was of very little calorific benefit.

OP posts:

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