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toothfairy

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Reply with quote  #126 
keepsmiling,
I dont think so, from what I heard,generally GP gets inital/discharge letters from CAMHS ..thats about it....Nelly will prob know more...Could your H phone or email them?
Agree with keepsmiling and mjkz that Nelly's reply was entirely appropiate....
Best wishes

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
kayjay

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Reply with quote  #127 
KeepSmiling,

When my d was referred to the Maudsley (rubbish CAMHS and low weight) we were told they had a 3 month waiting list for ITP. The referral form went in on the Monday (I had to kick off to get it done). We had a call from the Maudsley asking us to go for assessment on the Thursday. They emailed us a raft of info the same day and were so helpful and reassuring. They said to expect the assessment to be 2-3 hours but we were there most of the day, they sent us for bloods/ecg and had our daughter sit down for lunch with a staff member. As she was able to eat with them, they gave me the meal plan there and then, and she started ITP the following day.

Things might be different for you as my d was medically compromised - everyone's situation is different, but they tailor the assessment to what they see so it would be wise to keep travel plans and any arrangements you need to make at home (I don't know how far you are from London) flexible.

They are very used to hearing about - ah- 'sub optimal' care from previous agencies so just be very honest. They are likely to not comment much as they need to be professional but they do hear you. They'll take a very thorough history so it would be good to have dates etc all organised even if you need to write a timeline to take so you don't forget things - would be easy to do when you've had a hell of a time of it x

Call today and check about the referrals x Re CAMHS information, our gp was not informed that d is in an inpatient unit so CAMHS communication is patchy to say the least.

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

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Reply with quote  #128 
Our GP had some information, they had responsibility for bloods and weight monitoring so that was on the care plan. Our care plan wasnt worth the paper it was written on. It had what to do in a crisis but when we tried to follow it it didnt happen.
I would request everything possible in a quick email while you can.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
keepsmiling

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Reply with quote  #129 
Well we phoned the Maudsley and they haven't had a referral but they offered to send the forms to our GP rather than wait for the consultant so we have said 'yes, please do!'  I phoned the GP surgery to warn them of the forms being faxed and arranged to talk to the GP over the phone tomorrow to explain to him about everything.  Hopefully everything will go through tomorrow afternoon, once I have spoken to the GP.  

I have been incredibly busy at work and at home so haven't yet chased the care plan or D's notes but will try to get that done tomorrow or very early next week as well.  The good news is that D has kept eating what we are giving her and knows that there are increases to get her moving in the right direction.  She's not happy but seems resigned to it and there have been no dramas so far at least.  

D is still saying that she doesn't know if she will be able to engage with the ITP and asked us not to pin our hopes on it, so I explained that we are just asking her to go for an assessment (which she has agreed to do) and that anything after that can be decided if she qualifies for their program.  She is aware that if she can't do it then IP will be the alternative but again I don't want to make her feel guilty, she is trying hard but the AN is so strong and we don't ever want her to feel guilty for that so if IP is what happens then that is just because she is so ill and not because she is a failure. I just wish she understood that as she does seem to be feeling guilty about it all at the moment, but is unable to react differently to all the challenges.
toothfairy

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Reply with quote  #130 
Hi keepsmiling,

Well done on getting so far..
But ..
I urge you to stand your ground...
She is nearly 18, this is your chance to get her into recovery, she has to grasp the nettle...She cannot be allowed to choose not to do this, if that treatment is what you decide for her...
AN will try any stalling tactic to stay out of treatment,,,it looks like AN is getting set up to stall you...

I would advise you not to get involved in anorexia's negotiations....
When she kicks off, then you could say hmmm, I know this must be so hard for you, now where is the remote control!!

I would make no promises or trade off's it is all feeding into her illness...
Please do not get manipulated by the anorexia. 

Bottom line...if you get a place at The Maudsley  and you want her there, then it is not negotiable....
She is REQUIRED to attend that programme...end of story..
Best wishes,
TF

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
kayjay

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Reply with quote  #131 
Hi KeepSmiling,

I was wondering how things are going x

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

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Reply with quote  #132 
Well, I thought I would post a quick update.  We heard from the Maudsley on Friday afternoon saying that they have received the referral forms, though I think they only got faxed through once I started chasing them :/  We are now waiting for a date for assessment but are hoping it's not too long into the future.  We don't know if D will qualify for a place but if she does then we will be insisting she attend - as you said TF, it will be required of her and not optional.

Today I also had a letter from her 'team' with the notes from the meeting last week.  It has made me very angry and wanting to tell them where to go but for now I can't since we will need them for IP if D does not get a place on the ITP program.  The things that have really made me angry are two key points they make (That apparently they have been telling us for over a year!!):

1)  Community treatment has failed  -  Yes, I totally agree that it has but they have hardly tried to help her, just told us to keep trying at home, ignored our pleas for more support or advice, refused to give her a different T that might move her forwards and not listened when we have begged for an IP bed for her.

2)  (D) needs to take responsibilty for her recovery.  She has not demonstrated the motivation or willingness to make changes to her eating or restore weight.   - True, but what do they expect from a severe AN sufferer?  She is hardly going to turn around and say 'Yes, I know I am ill so I will now start eating everything and get myself better'!!  

Sorry, I know it's all true but just wish they followed FBT and had been able to support us more, or force D into hospital much sooner.  On the plus side, with your support I am still being relatively successful in taking control of meals and am hoping that there will be a good gain this week - find out Wednesday!
kayjay

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Reply with quote  #133 
Urgh - the second point just illustrates how little your team understand :-(

Fingers crossed you'll hear from the Maudsley team too. Their recommendations do hold a lot of weight, they are regarded as being experts in the field. If they feel that ITP is not a good fit for her and that inpatient care is the best option, it would be a brand CAMHS team that didn't take heed of this and move forward.

Xxxx

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

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Reply with quote  #134 
keepsmiling,
I am cheering here!!!!Well done, fingers crossed for a gain on Wed...

And regarding the letter from the team, look on the bright side, they gave you in their own failings in writing too, so hopefully even that letter alone is a golden ticket into the Maudsley or IP...

KEEP GOING!!!!YOU ARE DOING GREAT..

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
NELLY_UK

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Reply with quote  #135 
Great for the second opinion at maudsley. Take a bag in case they offer her something there and then, no need to say to her. I am not sure if they would do that but you just never know. Be ready, in every way you can.
When we went for an assessment at Huntercombe they gave us a bed there and then. D realised what was happening & flipped- more proof it was needed, we had to leave her there. We were expecting that, but as previously we booked a bed in a hospital and lost it wihin a few days, we knew we had to take what was offered immediately.
That was the hardest thing ever.
Months Later, after a years discharge into local care, when we went to maudsley for a second opinion, they offered us day patient and it was voluntary for my d to decide. As she was in a good place at the time she said no. Since then she has gone downhill. Take what you can when you can. I hope the date comes through early.
Well done x

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
NELLY_UK

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Reply with quote  #136 
Have a looksy at the new NICe guidelines, I posted a link to them in a new thread. I guess they should be saved on here somewhere as well.
X

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
keepsmiling

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Reply with quote  #137 
Thanks for the link to the guidelines, it sounds as though it will be easier to get D into IP now and, hopefully for us, a little more locally too which would be good [smile]  

We are heading up to the Maudsley for assessment next Thursday and they have suggested that D will go there 3 times a week.  Of course, D is now saying she won't go but we have told her that she is definitely going to the assessment, however she is saying that she can't / won't engage with the program.  Ultimately it is up to her, we cannot force her but we have made it very clear that things are not remaining as they are so she only now has the two options of ITP or IP.  She accused me of threatening her with IP but I am not, I am just making sure she knows that she has a choice but it is very limited and that the one thing we will not allow is for her to remain ill any longer.  Of course, that led to her deciding she wouldn't eat tea last night but we got her to have her evening snack which was at least something.

Unfortunately at her weigh-in this week she hadn't gained despite the increases but we have put in even more and they are going in.  Small steps but we're determined [smile]

Next step is to warn my boss that if D does decide to participate in the ITP then I won't be in work for the rest of term - gulp!!  Oh well, family comes first.
Torie

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Reply with quote  #138 
Stupid question, I know, but what is "tea"?  A single example would suffice.

This two steps forward, one step back thing gets tiring, doesn't it. 

Thanks for keeping us posted, Keep swimming. xx

-Torie

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NELLY_UK

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Reply with quote  #139 
Laughing out loud! Tea is not only a hot drink but an early afternoon meal which is sandwiches. Cakes, fruit. Tea at The Ritz is the ultimate experience ( in central London)iMy nan made us tea and it was bread and jam. Yummy! X smiling at the question - thank you. X
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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
Torie

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Reply with quote  #140 
Thanks, Nelly.  So it is breakfast, lunch, tea, dinner?  My non-ED d is studying in Germany this semester, and she tells me the biggest meal of the day is at what we consider lunch time.

As a child, we had breakfast lunch dinner 6 days a week, and on Sunday, we had breakfast dinner supper.  I never thought to ask about other variations, but would welcome knowing more. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
scared_and_exhausted

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Reply with quote  #141 
Torie,
Lots of people here in the UK call 'dinner' tea!
toothfairy

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Reply with quote  #142 
Hi Torie
For us in iteland, the popular variations are-
Breakfast
Lunch
Dinner

Or
Breakfast
Dinner
Tea

That would be what people do here so if a big meal was served at dinner then tea is the lighter meal, like lunch ie a sandwich or similar.

Supper for us would be a evening/night time snack or informal light meal , Late, that some woukd have....
Cheers!



__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
keepsmiling

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Reply with quote  #143 
Sorry for causing so much confusion!  We are one of those strange families in the UK that eat breakfast, lunch and either 'tea' or 'dinner'.  To be honest half the time we call it tea and half the time it's dinner in our family so it can be either!  It seems to depend on where you come from what you call the final meal of the day - we Brits never seem to make anything simple [smile]
Torie

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Reply with quote  #144 
Thanks for the replies.  When I hear "tea," I think fancy hats and Beef Wellington.  Well, in my former life I thought that. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
melstevUK

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Reply with quote  #145 
keepsmiling,

"Ultimately it is up to her, we cannot force her but we have made it very clear that things are not remaining as they are so she only now has the two options of ITP or IP."


Somehow you need to ensure in your mind that what needs to happen, happens. If you let her get away with not attending this appointment - you are saying that it is up to ed and not you.

I would be prepared for a refusal and rage, and working out how d gets to that appointment - will h be going with you?  How are you going to deal with a showdown on the day?  

There was some criticism of me on the forum, when I described how I sat in the car with my d for her first appointment and I threatened that I would drag her through the car park by her hair if she did not get out of the car and walk into the hospital herself.  But at that point I was desperate - if dragging her by the hair was what was going to save her life, what choice did I have?  I was utterly distraught and needed to impose my will over my d in some way, and that was the only way that I could see of influencing her in that moment.  It wasn't necessary in the end.  But I have no regrets and if dragging her by the hair had to happen - I would have done it.  We needed help and she was hospitalised a month later because her weight was so low.

I just want to warn you that you may be faced with total rebellion on the day - and it is as well to think how you are going to deal with the situation when it arises.

 

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Believe you can and you're halfway there.
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keepsmiling

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Reply with quote  #146 
Melstev-UK, we have told D that is exactly what we will do.  She knows that we expect her to attend the assessment next week and that we will drag her there if we have to - I am, like you were, at the point where I don't care if she screams all the way and we physically force her in there, she will go.  H is coming too so I won't be alone if she did kick and scream. D realises this and has agreed to attend - at the moment.  She has said things like, "I won't be weighed there" or "I won't let them take bloods" but I also know that when faced with a figure of authority, where the expectation is that she complies, she will allow them to do whatever they need to.  We are also expecting her to complete the patient surveys they sent us and have told her they must be done by the end of the weekend.    I did the parent ones last night - took hours!!

The problem for us now is that she has to be at least willing to attend the three days a week and give their program a go.  I am more than happy to drag her there but I cannot force her to join in with the sessions or eat what they tell her to but, again, I am just hoping that she realises that she is going to have a higher level of care and that this might be the better of the two 'evils' (in her mind).  Either way, she knows we expect her to have a significant step up in care in the next few weeks and that we will not stand by and leave her as she is now.
Torie

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Reply with quote  #147 
I hate to say it, but please be sure to engage the child door locks on the way there. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
mjkz

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Reply with quote  #148 
Quote:
There was some criticism of me on the forum, when I described how I sat in the car with my d for her first appointment and I threatened that I would drag her through the car park by her hair if she did not get out of the car and walk into the hospital herself.  But at that point I was desperate - if dragging her by the hair was what was going to save her life, what choice did I have?


I've been in a similar place and told my daughter I would drag her kicking and screaming into her first appointment if that was what needed to happen.  I've actually had to do it too.  Anyone criticizing that has obviously not had their own "Come to Jesus" moment when they are so truly desperate that they will try anything!!
Foodsupport_AUS

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Reply with quote  #149 
Quote:
There was some criticism of me on the forum, when I described how I sat in the car with my d for her first appointment and I threatened that I would drag her through the car park by her hair if she did not get out of the car and walk into the hospital herself.  But at that point I was desperate - if dragging her by the hair was what was going to save her life, what choice did I have?  I was utterly distraught and needed to impose my will over my d in some way, and that was the only way that I could see of influencing her in that moment.  It wasn't necessary in the end.  But I have no regrets and if dragging her by the hair had to happen - I would have done it.  We needed help and she was hospitalised a month later because her weight was so low.


I have been this place too, and had to enact it. Dragging by the hair probably not, but physically carried in, by two people with a squirming writhing 14 yo definitely. It had to happen, and was done with no nonsense, no anger. 

I also agree about the child locks. FYI I had thought I had them on the first time and discovered they were not as she undid her seatbelt and leaped out of a slow moving vehicle. The car was promptly stopped, child chased down, physically carried back to the car, child locks correctly engaged, and from then on hands were pinned to stop the undoing of the seatbelt. ED will fight tooth and nail not to go sometimes. 

Keepsmiling I feel for you, you are doing the right thing. Things do need to change and she can't do it herself. She will either be able to use this pressure to move forward as outpatient or will need inpatient. It is a hard illness and heartbreaking for parents to deal with. 

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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.
melstevUK

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Reply with quote  #150 
keepsmiling.

I am so glad you have plans in place.  At the moment I would not worry about the times ahead and if she will comply with the three day programme - each step at a time.  My d refused to be weighed at one appointment but a nurse took her away on her own - and she got weighed.  These clinicians - especially at the Maudsley - know exactly what they are dealing with.  

Keep hiding the doubt - and keep maintaining the strong and determined face.  You are doing great and finally it seems as if there is a chance to turn things around and start a recovery going. 

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Believe you can and you're halfway there.
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