F.E.A.S.T's Around The Dinner Table forum

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Hendrixt

Hi All,

Not posted for while as we’ve been bogged down  dealing with school issues. 14yrs old D had AN since January 2019 - been weight restored for a couple of months, eating well but with plenty work to do to get to full recovery. 

We’ve been in the specialist eating disorder service of CAMHS (UK) but therapist now recommending our case is transferred to general CAMHS service. We’re quite concerned as clinicians are unlikely to have the same expertise with ED and we will no longer have access to our psych who has been very good. 


Suppose it’s mainly a question for members in the UK. Has anybody been transferred into general CAMHS at this stage of treatment - what’s your experience and what was the transition like ?

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ValentinaGermania
Sorry to hear that, Hendrixt. I hope someone from UK will be around to help you soon.
Did your therapist explain why they decided that? Can you perhaps continue to see your psych on a private base?
Or change to another FBT specialist on a private base for some time xin addition? Have some sessions with Eva Musby for example?
Keep feeding. There is light at the end of the tunnel.
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Hendrixt
Hi Tina hope you’re well. Thanks for the advice and yes these are all options to look at. I just wondered what dealings people had with CAMHS in this situation x
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ValentinaGermania
Sorry, but I do not know anybody that was send to general Cahms with an ED. I think this is not the normal approach. Maybe they just want to get rid of her to have a free space?
We are all doing well, thanks for asking!
Keep feeding. There is light at the end of the tunnel.
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Hendrixt
Sorry, but I do not know anybody that was send to general Cahms with an ED. I think this is not the normal approach. Maybe they just want to get rid of her to have a free space?
We are all doing well, thanks for asking!



thanks Tina. I’m getting a few replies on the Facebook group. General feedback is that this should not be done. Yes I think you are right - they are doing it to try to free up resources. 
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ValentinaGermania
Can you talk to the head counselor or the person that is in charge (I do not know how it is called there) and ask why?
Do they need your YES to do that and can you refuse it?
Please contact MelstevUK, she knows your system well and what to do, or Eva Musby, to avoid that.
Keep feeding. There is light at the end of the tunnel.
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Hendrixt
Can you talk to the head counselor or the person that is in charge (I do not know how it is called there) and ask why?
Do they need your YES to do that and can you refuse it?
Please contact MelstevUK, she knows your system well and what to do, or Eva Musby, to avoid that.


Yes Tina it is possible to escalate things. We have done this previously by taking it to the psychiatrist who oversees the case and got a good result. I was just trying to get a feel from others who have been through the same problem and whether it is common across the country for patients to be transferred in this way. I have previously spoken to someone in here who went through something similar but I can’t remember who it was. I gave a lot of contact with Eva so I can also speak to her at some stage. 
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ValentinaGermania
I think it was freedomfighter and ronson that quit cahms but not changed to general cahms. I personally cannot remember someone who did that. I am quite sure it is not common in UK.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Hi Hendrixt,

I haven't heard of anyone moving from specialist ed CAMHS to general CAMHS but I am guessing that they think d is well enough to be discharged but still needs support for the anxiety.
However, I am very unhappy with the notion of 'weight restored' for a 14 year old - she will need to gain weight right through her teens and early twenties - so I would be asking for the message to be given to her loud and clear that she will need to keep eating, growing and gaining weight, even if she is transferred to general clinicians.
It may be that there is someone who can work with her anxiety about school or whatever is bothering her - but you do not want any inexperienced person reassuing her that she is fine because she is 'weight restored' and putting the message out that she can stop gaining weight.
If you can get this across to your d's team or psychiatrist, I would worry less.  I am cynical and think it is all about statistics and getting patients off their books and because they are so pressed, they think your d is out of the danger zone and can be moved on.  
So it is all about how this transition is managed - transitions at every point are danger zones for ed patients - so you need a talk with someone on the team about your concerns.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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Hendrixt
melstevUK wrote:
Hi Hendrixt,

I haven't heard of anyone moving from specialist ed CAMHS to general CAMHS but I am guessing that they think d is well enough to be discharged but still needs support for the anxiety.
However, I am very unhappy with the notion of 'weight restored' for a 14 year old - she will need to gain weight right through her teens and early twenties - so I would be asking for the message to be given to her loud and clear that she will need to keep eating, growing and gaining weight, even if she is transferred to general clinicians.
It may be that there is someone who can work with her anxiety about school or whatever is bothering her - but you do not want any inexperienced person reassuing her that she is fine because she is 'weight restored' and putting the message out that she can stop gaining weight.
If you can get this across to your d's team or psychiatrist, I would worry less.  I am cynical and think it is all about statistics and getting patients off their books and because they are so pressed, they think your d is out of the danger zone and can be moved on.  
So it is all about how this transition is managed - transitions at every point are danger zones for ed patients - so you need a talk with someone on the team about your concerns.  


Hi Melstev - this is our concern - she's at weight restored - so back on the growth curve but obviously she needs to gain weight over time and there is much work to do to ensure full recovery. Unfortunately the message has never been loud and clear re food, gaining weight - therapist started panicking about a kilogram before but we pressed on. We only want to keep on their books to have occasional appointment and support for re-lapse management and access to the psychiatrist who is very good. I don't want unqualified people going anywhere near her. Anyway we will stand our ground and will be like pushing a mountain to get rid of us
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teecee

[QUOTE username=Hendrixt “Anyway we will stand our ground and will be like pushing a mountain to get rid of us”

This made me laugh Hendrixt !! You show ‘em 😂👍🏻 

In all seriousness I wish I had been like this .... relapses may have been prevented then 

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Hendrixt
teecee wrote:

[QUOTE username=Hendrixt “Anyway we will stand our ground and will be like pushing a mountain to get rid of us”

This made me laugh Hendrixt !! You show ‘em 😂👍🏻 

In all seriousness I wish I had been like this .... relapses may have been prevented then 



Hi Teecee - yes we are very hard to get rid of lol - TBH it's mainly the pyschiatrist we don't want to loose. She is backing the ECHP application and we are only at the very beginning of that process - we can get access to her very quickly through the CED but is we go into general CAMHS - god knows how long the waiting lost for the psychiatrist is
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ValentinaGermania
Is there any chance to be her private patient if necessary?
Keep feeding. There is light at the end of the tunnel.
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Hendrixt
Is there any chance to be her private patient if necessary?


Yes Tina that would be an option. However we are happy with the psychiatrist in CAMHS and that's why we want to keep in their service. We had meeting with the therapist yesterday and put forward a proposal that we stay in the eating disorder service as well as accessing services from general CAMHs and she is going to discuss it with the service managers. If they don't agree with our proposal we have the option to seek a direct meeting with the service manager - if we are still not happy there is a complaints procedure we can use - so there's plenty of options yet. We also know that when the eating disorder service was set up in 2016 the service specification did not allow for transferring patients who are not recovered - so I think we have a really strong case 

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ValentinaGermania
I cross all fingers that it will go well! Keep us updated! You are not only fighting for your own d, you are fighting for all other cahms patients that are send off too early.
Keep feeding. There is light at the end of the tunnel.
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teecee
It depends what their definition of recovered is. Please make sure you take your definition with you and insist on them working to your version 
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Hendrixt
I cross all fingers that it will go well! Keep us updated! You are not only fighting for your own d, you are fighting for all other cahms patients that are send off too early.


I will Tina - I think it would be helpful to share the outcome with others
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Hendrixt
teecee wrote:
It depends what their definition of recovered is. Please make sure you take your definition with you and insist on them working to your version 


Absolutely Teecee - save to say our definition of recovered is a long way from CAMHs. They are fully aware that we have a different opinion on that and have given up long ago trying to sway us. The school nursing service have agreed to take over her weight and height monitoring and also the tracking of her growth curve. This has been agreed with CAMHs (albeit, of course that is only one small piece in the jig-saw of recovery) To be honest the CAMHs therapist says that they've never had any parents asking to see CAHMs calculations on a child's growth curve which is really quite surprising. 
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ValentinaGermania
It would be intersting to know what NHS in his papers refers to as "recovered". Maybe it would be woth tohave some briefing with Eva Musby before that appointment. She could arm you with some arguments 🙂.
Keep feeding. There is light at the end of the tunnel.
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LaraB
Well I must be an awkward parent too as I want to see everything! A good therapist will welcome parent’s being actively involved in discussing a young person’s recovery and will be keen to co-produce a treatment plan to achieve full recovery. 
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Hendrixt
It would be intersting to know what NHS in his papers refers to as "recovered". Maybe it would be woth tohave some briefing with Eva Musby before that appointment. She could arm you with some arguments 🙂.


We've been through all those arguments Tina including me quoting Eva and I also got a letter from Dr Sarah Ravin to prove my point - we know she is nowhere near fully recovered and not as far along the treatment journey as CAMHS would say she is
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