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kayjay

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Reply with quote  #1 
Hi All,

Long time no post, some of you might remember my D (16) was on the ITP (intensive treatment programme) at the Maudsley and was making good progress. ITP is a time limited intervention, and because she started with them at such a low weight, when her time came to go into the step down programme she was 79%wfh (she was 63% when she started with them). I felt that step down was too soon for her, but into step down we went, it took less than a week for her to start severely restricting, 3 weeks later she's lost nearly 4kg and we were discharged back to our local CAMHS team to arrange an inpatient admission. D says that she is very motivated to recover, she wants her life back and wants to be strong and healthy to restart school in september, but she just cant pull herself out of the current crisis. She's currently eating about 600 cals/day and about a litre of water, her obs are ok at the moment but her weight and physical obs are sliding. The recommendation is for a specialist EDU, her miniteam at ITP estimated that she'd need a 3-4 month admission - she's currently back down to 73%wfh.

The CAMHS bed form went in today, and we had a call this evening asking us to take her to the Snowsfield unit at the Maudsley for assessment and admission tomorrow. Its great that they've acted fast and the unit is 1 1/4 hours from home so it's as local as we're likely to get. From looking at Google I can see that its a general adolescent MH ward, over half of the young people admitted have psychosis, and that the CQC report found it to be a safe and effective unit.

Does anyone have any experience of this unit or any advice? I am concerned that it's not a specific ED unit and I can't find much information on what they do in terms of treatment or therapies there. Also, as NHS patients, do we have the right to decline this place if we feel that its not the right place for our D? If we did, would we get further offers? The ITP team felt strongly that she should go into a specific ED unit - are we able to hold out for a bed in one? D is not under a section - she is asking for help. She is freaking out this evening at the thought of being inpatient for several months on a small unit with psychotic patients and possibly without the treatment that would help her to get well. 

Sorry if this comes across as a bit gabbled and panicky - but thats how i feel!

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D, 16, diagnosed with AN Aug 2016. One day at a time...
Foodsupport_AUS

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Reply with quote  #2 
Sorry that this is happening to you and your D. It is truly a frustrating component of treatment for ED's that people seem to be moved to a new phase or treatment when clearly they are not ready. I had this experience a lot with my D. 
I am sorry that I can't speak to your choices in care, being in Australia. Hopefully someone who knows more will come by soon. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
MarcellaUK

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Reply with quote  #3 
I'm in the UK but have no personal experience of the unit or indeed of general adolescent units. I do know others who do have experience of Springfield though and I hope they will be along shortly.

I rather regret our lack of experience in our case as I think our daugher, who has comorbid conditions, might have done better on a general unit than on the specialised adult unit she went to at 19 (not that they didn't both save her life and liaise with the adolescent unit on the same campus about her care)  but your daughter is in a different situation.

It's difficult for you as, under the current system, while you undoubtedly have the right to refuse a place if she hasn't been sectioned, you don't have a lot of power to insist on the authorities finding her an alternative bed in the current well publicised situation of a chronic lack of beds and patients being shipped across the country chasing the next available bed.

Can you go back to your CAMHS team and ask them to go over the issue with you. What are the advantages of the Snoswfield bed (apart from the fact that it is local and available), what do they see as the disadvantages, what hope do they hold out of finding a more appropriate bed in the next week or so?

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Penny31

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Reply with quote  #4 
My D was in there very briefly over Christmas, when the Bethlem and Snowsfields often merge for a few days. From what I understand, it's sort of half way between a general psych ward and a specialist ED unit. Unlike the Bethlem, Snowsfields is able to administer NG feeds, and they also have a considerable amount of input from the team at the Michael Rutter Centre, whereas at the Bethlem there's no real ED support. When my D first went to the Bethlem I was terrified by the thought of her being on a ward with kids with conditions like psychosis, but quickly found my preconceptions of it to be wrong. Your D will have her own room, it's bright and airy, and the psychotic patients are generally just 'normal' kids with a difficulty that occasionally manifests itself. My D certainly did witness some scary and disturbed behaviour on the general ward at the Bethlem, but much of that came from ED patients (including, in fact, herself) rather than the psychotic ones. Whether the treatment at Snowsfields is effective I really can't say. It wasn't great at the Bethlem, in terms of actually tackling the ED, but the staff were extremely caring and I'm very grateful that they at least kept my D alive and at a reasonable weight (her ED is very complex - not classic AN). My D is now supposed to be attending the school at the Maudsley ('supposed' being the operative word), where all the Snowfields patients go, and having seen them in the corridors they all seem a nice lot. If I were you I'd take the Snowsfields bed for now, given how critical your D's condition is. You might always be able to transfer her somewhere more specialised later. And if you want to meet up for coffee in the Maudsley cafe one morning, do let me know!
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14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
kayjay

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Reply with quote  #5 
Thanks for your replies - they've helped more than you could know x 

I had had a conversation with her ITP therapist this morning. There's currently an 8 week wait for an edu bed in the uk, and at her current rate of restriction we just don't have 8 weeks. She told me about the links between snowsfield and ITP - things like they share dietitian so the food would be familiar, and the education staff are the same too. She said that with her knowledge of the unit and of my d she feels that it would be a good option, and much better for her than staying home and deteriorating. She also said that once she was in there, if it was felt that she'd be better in a dedicated ed unit then that would be arranged. I trust her advice and opinion and it went a long way to making us both feel better 

She goes in this afternoon x 

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mjkz

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Reply with quote  #6 
Good to hear Kayjay. I'm glad you are taking the bed.  I am not in the UK but beds are pretty far and few so jump at what you can get.  I'm so sorry they pulled the support she needed to do this outpatient.  She is truly a remarkable young woman for what she has been able to achieve so far!!!
kayjay

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Reply with quote  #7 
Hi tooth fairy 

I'm really glad to hear that your son is making good progress :-D



Early signs are not good. Daughter phoned absolutely in bits after dinner time. She's the only ED patient in there. They sat her down with a plate of food, same size portion as the other young people despite saying she'd be on half portions initially. Staff member sat alongside her noisily eating her own meal making no attempt to communicate with D. Food cold and unappetising, surrounded by other patients complaining of how disgusting food is and refusing to eat. Staff member sitting with D told her if she didn't eat it she'd have to have fortisip. D replied she didn't think she could drink it. Staff member cleared her own plate and Ds, left the room. She phoned me saying no
meal plan, no portion control, no support, no clue. She knows that she needs clear consequences for not eating so that she doesn't have to take responsibility for the decision to eat, which is why she could do it at ITP but not at home. She wants to get well but she cant push through that hurdle. I told them this before I left her there.

I'm at home distraught. I expected her to struggle but I didn't expect so little - she would have eaten more at home. She's had no oral
intake since the water I gave her before we arrived mid afternoon. They are going to end up
tube feeding her because they don't know what else to do :-(

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D, 16, diagnosed with AN Aug 2016. One day at a time...
Foodsupport_AUS

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Reply with quote  #8 
I am sorry it is off to a bad start. I had a similar experience here in Australia with my D in a general psychiatric ward. It is OK to be the squeaky wheel and to complain, it is OK to contact the unit and ask for better. 
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Torie

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Reply with quote  #9 
Quote:
Originally Posted by kayjay
Daughter phoned absolutely in bits after dinner time.


As you may know, that is absolutely to be expected.  They make up all kinds of stories about how horrible it is, which of course makes it impossible to have any idea at all what's going on.  Ugh.

Quote:
Originally Posted by kayjay
Staff member sitting with D told her if she didn't eat it she'd have to have fortisip.


Sorry, I don't understand.  Did she have the fortisip or was it an idle threat?

Quote:
Originally Posted by kayjay
I'm at home distraught. I expected her to struggle but I didn't expect so little - she would have eaten more at home. She's had no oral intake since the water I gave her before we arrived mid afternoon. They are going to end up tube feeding her because they don't know what else to do :-(


Oh dang, I'm so sorry.  Have you spoken with an employee to get their side of the story?  As FoodSupport said, it's fine to complain.  Good, even.  We have some very experienced squeaky wheels here who can help brainstorm ideas for improved treatment.

Hang in there!  xx

-Torie

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mjkz

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Reply with quote  #10 
To be honest with you, I have never not gotten a phone call from my daughter with very similar complaints.  I would expect them for at least the first two weeks.  The food is never what she would want to eat.  No one is ever helpful enough (they actually expect me to eat this crap!!!) and while supplements are not great, they are an alternative that your daughter may have to take rather than the food.

Quote:
She knows that she needs clear consequences for not eating so that she doesn't have to take responsibility for the decision to eat, which is why she could do it at ITP but not at home.


The consequence will be tube feeding.  Every meal she misses brings that closer and closer.  If she could have eaten more at home, she would have.  One of the things our kids have to learn to do is eat no matter what.  The situation is never going to be perfect and she needs to push through it and get over that hurdle to avoid a tube. [frown]
bonny

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Reply with quote  #11 
Oh no Kayjay - just seen this. 

I am pretty sure we met at ITP. I am so sorry you are going through this. I would have thought that a bed in a unit in the Maudsley would mean that she would have support from the ED clinic, surely?

I reckon the experiences of others who have gone through this already could quite well be what is happening with your D - hopefully it will settle down in a week or so, but how awful for you all.

My S is in ITP - has been at a healthy weight for about a month, but the anorexic thoughts are currently stronger and he is starting to refuse snacks, so I can see we may possibly end up in the position you are in.

It's such a terrible illness and such an effect on the whole family. Sending you strength.
melstevUK

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Reply with quote  #12 
Kayjay,

Sorry you are having such an awful time.  With regard to what has happened today - my d was in a specialist ed bed in a general psych setting knowing she needed to be there and knowing she needed a few weeks of intensive support.  However at weekends the ed trained specialist staff were not there and there were staff who really knew nothing about eds who were not good at meal support, and other patients were not being pushed as hard as they should have been.
At least see what happens on Monday - agency staff may have been covering today and may not be quite as well trained.   

There is no doubt that a call of this kind is to be expected initially.  Although your d wants help and to get well - at the same time the ed voice also fights to try and get them taken out.  You will have the opportunity to talk to staff at the beginning of the week, until then tell your d that the quality of the food is not the issue but she has to fight to do as she is she is told.  At the moment her suffering is your suffering - ultimately she herself has to face down the illness and if the support is not brilliant just now, then tell her she will have to do more fighting in her head herself.  It sounds cruel but her suffering is impacting too greatly - can you try and 'stand outside it' just a little?  

"She knows that she needs clear consequences for not eating so that she doesn't have to take responsibility for the decision to eat, which is why she could do it at ITP but not at home."
She will clearly be better placed to take that decision when she is at a better weight - but in the end one day she WILL have to take that decision if she wants to leave this illness behind.  Maybe use this opportunity to reinforce that message.  Tell her you love her but that she needs to fight that voice in her head and that she WILL manage the fortisip.
Hugs - this is a slow journey.

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Believe you can and you're halfway there.
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bonny

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Reply with quote  #13 
Kayjay, I am thinking of you and your D a lot - how is she doing?
kayjay

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Reply with quote  #14 
Thanks for thinking of us - and yes Bonny we did meet. So sorry things are taking a downhill turn for your son, hopefully the staff can help him get back on track xxx

I took my d home after 28 hours on the ward. She'd had no food since admission, only two cups of water. I asked what the plan was and was told they'd continue to offer food or supplement and encourage her to eat, but otherwise they would wait until her physical obs declined enough that they needed to take her to A&E. They don't do NG feeds on the ward as the protocols and training are under review, and the nurse expressed that to a degree their hands are tied, they can't put consequences in place for not eating if they're not able to follow through. I said that I'd rather take her home and feed her what i could than just wait for her to become critically ill, and talk to the team on Monday.

Once home she was suddenly able to eat the 1500 calorie meal plan that she'd been unable to manage before. It was really hard going for her, but the consequence of going back in was worse than eating the food. In particular having been told by another patient that she's not skinny enough to be anorexic and other patients refusing to eat were hard for her to handle.

To cut a long story short, we told the team on Monday that while the staff had been lovely we don't think this is the right place for her, the recommendation was for a specialist ED bed and this appears to be what she needs. I've been taking her up for daily refeeding bloods and obs, officially she's classed as an inpatient on ward leave but they're pushing for transfer to an ED bed. She's still eating the 1500 cals a day. They've said that this will need to increase as it's not enough to maintain her weight, the thought of which freaks her out of course. As of yesterday she'd gained a little weight which has made sticking to the meal plan hard today, but I'm telling her that while she's not losing weight there's a far better chance of her being able to remain at home until an ed bed is available.

I know that some would disagree with my decision to bring her home but of course there are more details that I've not included in this post xxx

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D, 16, diagnosed with AN Aug 2016. One day at a time...
bonny

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Reply with quote  #15 
Kayjay, that's terrible. So sorry to hear that.

Both times S was admitted to a children's ward at the hospital, he was on a meal plan and had to eat. We never needed tube feeding, but it was available AFAIK. So why not for her? It just doesn't make sense - what were they doing with all the other patients? Were none of them eating? There seems no point to it at all.

Really hope they find a proper bed for her asap.

x
melstevUK

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Reply with quote  #16 
Kayjay, 

That is indeed awful - and clearly was not the right place at all if that was allowed to happen.

In terms of your d's intake - can you plan for an increase by discussing where she can add something?  While she thinks she cannot get above 1500 calories a day - is there anywhere you can get in another 100 calories, e.g. a digestive biscuit or a glass of milk, for example?

If you can sit down and discuss her meal plan and tell her than an increase has to be made - it will be easier for her to do it with preparation and without the anxiety at mealtimes itself.  If you give her a choice of two things and say that it needs to happen you might get somewhere.  I know you still want the ed bed but if the wait has to be so long it is important that you try and stop any further deterioration.

I know you are aware of that but perhaps others will come along to offer other suggestions.  If she can eat 1500 calories - she can move up to 1600.  If you can get even one increase, it is a start.



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kayjay

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Reply with quote  #17 
Thank you all - I'm glad to hear that others would have done the same - I don't want to come across as the over-fussy mum of a 'special princess'!

Bonny - she was the only eating disorder patient in the ward at the time.

I did discuss ways of starting to increase her calories - three of the meals were alongside drinks of 100ml fruit juice, 100ml water, just changing this for 200ml juice would increase it by 150/day

However today we have been told she's got a bed on a specialist ED unit in the Midlands from Monday. I believe the doctor at Snowsfield has been quite active in pushing for this for her and I'm very grateful for this. Hopefully she'll get the help there that she needs, although I'm sure I'll feel like I've lost my right arm for a while :-(

Kxxx

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melstevUK

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Reply with quote  #18 
I am so pleased Kayjay.

Her team at least realise that she needs to be in a specialist unit asap and have gone flat out to find her a bed.  The distance away from home does not matter if the care is good.

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Reply with quote  #19 
Hi Kayjay,

I'm so sorry you and your d have been having such a truly awful time. You must be so exhausted. It's good to hear a specialist bed has been found and that there won't be a long delay before her transfer - I guess your recent experiences will help you deal with the transition and the potential uptick in her struggles until she settles in. I really hope she responds well to being there and that things will soon start to move forward.

Will be thinking of you on Monday.

Sending you strength - make sure you plan something nice for yourself when you get home, if you can.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
mjkz

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Reply with quote  #20 
Kayjay it doesn't matter where she gets the treatment, just that she gets the treatment she needs so as long as she is getting it-good for you.
bonny

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Reply with quote  #21 
Kayjay, glad they have found her a specialist bed, despite it being a long way from you. How will visiting work, do you know? If she has to be there without seeing you daily/every few days, maybe it will be a push for her to try to take control of herself?
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