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NELLY_UK

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Reply with quote  #101 
I think when i was a bit tearful and they asked me why i wanted my d to go to hospital I said I think she is going to die, she is getting worse not better, its been two years of 'treatment' and i think she is going to die. Two years they left us telling us to wait and see. If it was ANY other illness that wouldnt happen with a child.
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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  #102 
NELLY-UK - I am so sorry you had to wait so long for treatment and help, the system in this country can be really awful.

I have today had an email from the consultant saying that she feels we have a strong case for IP under the MHA and she is actively looking for a bed for D.  It will be out of area as there are none anywhere near us so we are now just waiting to see exactly how far away D will end up.  I am ready for her to go to IP but am still struggling with the thought that she could be hundreds of miles away and we would not be able to visit much at all.  I have everything crossed that a bed becomes available within a reasonable travelling distance but am so scared.  I know lots of you out there have had to have your children moved long distances away but how do you cope not seeing them?  It is really tearing me up - I know it is the right thing to do but I also want her close enough that we can at least visit each weekend.  Why is life never easy or kind??
NELLY_UK

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Reply with quote  #103 
If they section her under the MHA she HAS to be in a bed within 24 hours. What are they waiting for? The longer they wait the worse she gets unless she is gaining weight and making progress.
How long are you going to wait? You can formally request an MHA and it has to be done.
Distance is something you have to deal with to get a speciaist bed and that is what you need to happen. Its awful but neccessary and the best outcome you can hope for currently.
I hope you get the MHA soon. 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.
toothfairy

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Reply with quote  #104 
Keepsmiling,
That is just GREAT news.
I hope it happens very soon given she is now 17.
Such a relief.
Honestly worry about the distance when it happens...it will work itself out.
Best of luck & well done on getting this!

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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.
K63

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Reply with quote  #105 
Hi keep smiling , thankfully they are looking for a bed for your d. It's a really difficult time and even though it's a relief that they are being admitted it's also so so hard . My d was a three and a half hour drive from home. It was difficult but it saved her life as she was just continuing to lose weight and becoming more entrenched at home . Also be prepared for the fact that it will also be difficult when she is admitted she probably doesn't feel she needs to be admitted and may beg you to bring her home but you will also be relieved to have someone else looking after her . Hope the bed becomes available soon . Thinking of you.
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
kayjay

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Reply with quote  #106 
Hopefully they'll find her a bed quickly x

Mine is 200 miles from home - about a 3 hour drive each way. I go up every weekend but I can't get up during the week.

It is really tough having her so far away. 8 weeks so far and I still cry in the car as I drive away. She texts on and off through the day and phones most evenings. But she's where she needs to be.

She's making steady progress and is showing resolve and motivation. Some days I wonder if the motivation is to get home rather than to recover, but hey, if that motivation is getting the food in, it's all good. There have been challenges - she feels that she's not a 'worthy' anorexic as she was the only girl on the unit who'd never been tubed, which was a close run thing for a while. I'm frustrated at the moment as it takes them so long to do anything - a week to add a biscuit or a slice of toast to her meal plan seems ridiculous to me when there is a dietitian and a kitchen in the building, she's still on under 2000 cals/day despite her weight restoration going slower than their stated target rate. But she's eating all food, no supplement, each week she looks a little better, and she's safe.

Got my fingers crossed for you that it's soon and not too far from home 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  #107 
Well, I had the meeting with the consultant and an ED nurse yesterday.  H couldn't get out of work to attend and D decided that to have her voice properly heard she would type up her views rather than attend too, so I was on my own and petrified!  

It went pretty much as expected, ending up with two actions and one thing they want me to do.  They have agreed to refer to the ITP program at the Maudsley in London for assessment but are also looking for a bed for D in our nearest hospital, Leigh House in Winchester.  They said that whichever comes up first will be what happens but they won't section D until there is a bed.  

However, what I found very difficult is that they again told me that I have to stop feeding D, that she has to realise that she can't do this alone, fail and accept treatment.  Whilst I understand that they need her to be as low as possible for IP, it goes so totally against FBT - or at least my understanding of it.  I thought that the idea was that we took control of all meals until she is WR, when we would enter Phase 2 and start slowly handing back control?  I am really, really struggling with the idea of just stopping all support.  I know that D is - like all AN patients - unable to feed herself right now and that the only thing stopping her from not eating at all is me.  I also know that D is resistant to change and just wants to keep her weight where it is now but as that is what she has been doing for a long time now, despite our support, surely we don't have to stop what little we can do for her?  They seem convinced that she will go to IP regardless so why are they getting so angry that I want to carry on doing what I am doing?  (And trust me, they were angry!)

All in all a difficult, frustrating meeting with no clear actions other than a referral to the Maudsley which they were reluctant to do (so not sure if they actually will send it off) and the threat - fourth so far since treatment began - of sectioning under the MHA but not until a bed becomes available.
toothfairy

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Reply with quote  #108 
Hi keepsmiling,
Great ,there is a referral to both,
Well done.

I am just another parent here, so this is ONLY my personal opion from personal research,knowledge & experience of the illness, & taking treatment team advice.

I would take what they said about not supporting her meals with a pinch of salt.
I would keep feeding her & try & give her as much cals as possible.
I would not allow my child with active chronic anorexia take control, & watch her very possibly go down further & get even more entrenched... Its like being advised to dabble in a little Russia Roulette, in my view...
No Way!

I would not not go with that " advice",

( I am confused here though as a few weeks back the ED nurse disagreed with you
threatening to remove support).

Anyway...
Here is what I would do now - FWIW!!
I would not let D know that they told me to stop feeding & continue on.

I would also write to the team today , via email & post, stating what is agreed about whats happening next regarding IP /ITP Maudsley.
I would outlline the failings in treatment so far in the letter & given she is 17, you need her to get a bed/place immediately.
I would also request all of her records & notes , to show them you are not going to be a pushover.
Thats what I would do, along with phoning them each & every day to chase referral & bed.
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.
Foodsupport_AUS

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Reply with quote  #109 
Great that there is a plan in place for inpatient care, but how frustrating for you that her sectioning appears to be one of convenience, that is she will be sick enough to need it when there is a bed? I agree with toothfairy's idea of asking for things in writing/writing things down. 

I understand your confusion. I wonder if the issue is this: when people have success with FBT the meal is chosen by the parents and it is all eaten, when the meal is not completely eaten, as now, then it is not a success, even if part of the meal is eaten.  So if re-feeding at is going to be successful without inpatient all meals are chosen by you and all meals are completed. Where that is not happening how do you change the approach? One approach is that used in treatments of older people with anorexia is where they work at trying to feed themselves, that is not doing FBT. Is this what they are referring to? 
I hope they are not saying that she should just be allowed to get sicker and sicker. 

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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  #110 
keepsmiling,

Wow am I raging on your behalf.  Unfortunately I do not know the legislation in detail but I can happily find out for you.  They usually apply MHA when the patient is deemed too sick to make decisions about eating and for convenience this is usually when BMI falls to 13 or under.  To my knowledge, there is nothing in the legislation that says that you can't apply the Act when the patient is at a higher BMI - but I expect the consultant is anxious because it will be more difficult to enforce, especially if your d has appeared quite 'reasonable' in her statement.  I imagine this is what the issue is for the clinicians.  However, clarifying and explaining this would have given you all an opportunity to look at other ways of moving things forward.  Allowing your d to become even more ill is absolutely wrong in every sense and clinicians should be doing the fighting to ensure more flexibility around sectioning, in my view.  

For every point lost on the bmi scale, I would argue that recovery takes longer, is more difficult, and the illness is even more entrenched the lower the BMI figures goes.  And to insist that you allow your d's bmi to drop for legislative reasons is not acceptable from a health point of view.  

It might be worth contacting the local Mental Health Officer and expressing your concerns to him/her.  This person may have a better picture of all angles of this situation and be able to offer more support.

I certainly would not back off from continuing the battle with your d over eating, particularly as you seem to have gained some headway.  And I would be expressing concerns that allowing your d to become more sick to guarantee treatment of a particular kind runs contrary to the medical code of 'Do no harm first'.  This decision-making needs to be challenged - but you probably don't have the energy right now to be having to take this on.  

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Kali

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Reply with quote  #111 
Hi Keepsmiling,

Even though it was a difficult meeting I really hope that the referrals will come through for your d. 

I, too, don't understand how it is your d.'s best interest for you to stop trying to feed her as much as possible and know it must be difficult and confusing to be getting this mixed message when your daughter's health is already compromised due to her inability to eat enough on her own.

Quote:
However, what I found very difficult is that they again told me that I have to stop feeding D, that she has to realise that she can't do this alone, fail and accept treatment.  


I remember one day when my d. said to me "Mom when I don't eat and I lose weight I feel as though I'm being successful!" 

So it is quite possible that by you not feeding her, which your team may be envisioning will make her realize she is "failing" may, in fact, be a way for her and anorexia to feel successful. 

We never worked as hard trying to feed our d. as we did in the weeks before she went to residential treatment. Even if the only goal we were able to achieve was to keep her from losing any more weight while every meal was a struggle.

Best wishes,

Kali





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mjkz

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Reply with quote  #112 
Keepsmiling, I don't see any difference between now and when you were thinking of withdrawing support. You wisely decided not to do it and you just got some really bad advice.  Keep feeding.

Quote:
Thats what I would do, along with phoning them each & every day to chase referral & bed.


This!!!  I'd be on the phone at least once a day and especially after any meals or snacks she doesn't eat. Keep hammering at them to take action.
NELLY_UK

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Reply with quote  #113 
I AM LIVID for you. Perhaps you can email to confirm the new 'care plan' that should include stopping feeding her, allowing her to drop weight, referral to Maudsley for second opinion on a treatment plan, needing an MHA BUT waiting for a bed first.
Ffs
You must formally push for a MHA write a request it and send a copy to the GP and social services.
You are legally entitled to a care plan detailing the plan.
It is clear THEY DONT HAVE A PLAN that cares for the health of your d.
Sorry - I need to go calm down.
They are feeding you horse s***. Dont let them the clock is ticking.
We requested a mental health assessment several times- it has NOTHING to do with BMI it is a mental health assessment Not a weight assessment. People have them for other reasons other than EDs. The responsible adult can formally request it. Social services can support ypu through the process
Sigh
Keep feeding her. Tell the GP what the care plan is.
Xxx

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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.
bryony_1234

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Reply with quote  #114 
Nelly, please don't use that foul language.
keepsmiling

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Reply with quote  #115 
Thank you all for your replies, I am so glad it isn't just me thinking that they have no care plan in place and disagreeing with their suggestions.  We told D yesterday that we will not stop fighting for her and that we will continue to be in charge of her food but that things need to change.  They had phoned her to tell her that they would refer to the Maudsley but also that they want her to go to IP as soon as possible under the MHA so she is aware of both options - and that we agree that a higher level of care is needed.  What they didn't tell her - thank God - is that they think she should be in charge of all her food, so at least they aren't undermining us on that one point.

I can't do much to chase a bed, we just have to wait for one I think (though we will chase that regularly).  I have already been in touch with the Maudsley and they told us that since she is likely to be sectioned soon, they would hope to complete an assessment within 7 days to decide if they can help or not, but that will depend on when they get the referral.  They did say that they would send us the referral forms and that if the consultant did not send them in the next couple of days, to take them to the GP instead so that is what I intend to do.  

In the meantime, H & I are going to put in increases to get D moving back in the right direction and will continue to feed her.  There is no way we are going to let her lose what little she has gained this last year and if we can get a couple of kilos onto her then even better, it means that she will have to be IP for less time and recover more easily.  

Last night I just didn't know what to think or do, other than that I just cannot walk away from her but today I am back, fighting for my child and the care she deserves. [smile] 
toothfairy

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Reply with quote  #116 
Good for you, delighted x
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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  #117 
I deliberately didn't use foul language. Confused. Its far less than others have posted on my thread.

Keepsmiling, I am glad you realised they dont have a plan. Sometimes the professionals have a knack of throwing us into confusion about the simplest of things- ie keep feeding her. I think it must be because of the stress of the situation. Dealing with an ed in the house is enough to send anyone into turmoil.
Have faith in your parenting and gut instincts as a mum. You are doing fab. Dont let them hoodwink you. So glad they didn't share the independent eating bonkers plan.
Hope you werent offended by my asterisks and abbreviations. 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  #118 
Hi NELLY_UK, I certainly didn't mind any of your posts, they have been hugely supportive and reflect my thoughts too - asterisks included!!

D was weighed today and due to the refusals at the start of us taking over her food she has lost 1.4kilos, but that was to be expected and we are already seeing far more compliance, including the fact that we have told her we will be increasing her intake to recognise this loss and get her back on track and she has accepted it completely.  We are trying to balance us taking over completely with listening to her requests - we are not negotiating over intake as such but if she wants something that is equivalent to what we suggest then we are happy to go with that as it makes her feel involved too, and I think that is helping her to trust us.  We still have a long way to go but are confident that, with our change of attitude combined with a higher level of care, she will recover one day.  Thanks again to everyone for helping us with this long journey, you are all amazing. 
Torie

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Reply with quote  #119 
Quote:
Originally Posted by keepsmiling
However, what I found very difficult is that they again told me that I have to stop feeding D, that she has to realise that she can't do this alone, fail and accept treatment.  
 

No.  Just no.  In my opinion, by saying that, these people have proved that they cannot be trusted.

Please, do not trust them.

Great that you have called Maudsley yourself.  That is obviously the kind of thing you will need to do.

And, if possible, don't let them gang up on you like that - your h needs to be by your side in these meetings.  Not only is it all of them against the one of you, but people just naturally seem more inclined to try to steamroll a woman than a man.

Again, until and unless they earn your trust, do not trust these people.  Too many others before you have been put off and put off and put off, until they are too old to qualify.

You are a fab mum.  Keep fighting for your d. xx

-Torie

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toothfairy

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Reply with quote  #120 
Hi Nellly,
Hope things are a bit more stable at home,
Great post👍 are you saying that keepsmiling is legally entitled to a care plan from CAMHS?
Do you mean like a treatment plan?
if so, I would have thought so too........Surely tthere has to be some structure & formality here.
Keepsmiling, would it be worth phoning CAMHS in the morning requesting the care/treatment plan?
Keep going
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.
keepsmiling

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Reply with quote  #121 
Torie & TF - To be honest I haven't trusted D's 'team' for a long time now - if they really knew what was best then we wouldn't still be here at this weight, with no support and rubbish advice.  I am not really sure if I care whether they have a care plan or not as I am not sure it would be worth the paper it was written on.  I certainly have no intention of following their advice of stopping care for D to prove that she can't feed herself - she's AN for goodness sake, of course she can't feed herself yet!!  I have no intention of doing what they tell me to and right now feel that the best decision we have made was to take control last week, I just wish we'd done it a long time ago.

We are well aware that D is very entrenched in this vile illness and may well need a higher level of care, hence the call for either the Maudsley ITP or IP, but in the meantime we will continue to fight for her in the way you have all convinced us is best - calories, calories and more calories.  The only dealings I really want from them right now is to either find her a bed or get that referral organised - we will be checking to see if the Maudsley has the forms tomorrow as we can't see any reason it should take more than two days to send off a form.  If they haven't sent it then I will get a copy of the forms and take them to our GP and ask that they complete them instead.  

We will be chasing the IP bed as well but since this is not the first time they have promised D would get a bed and then not delivered one, I am not sure they have grounds for sectioning so we are going to focus our efforts more on London as at least we are fairly certain D meets their criteria.  

What makes me most sad is to know that actually we are far from alone in getting poor treatment advice and that a lot of you have had similar or worse.  There is no excuse in this modern age for any child to have to suffer that but I wish all of you good luck in getting what is needed for your child too.
deenl

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Reply with quote  #122 
Hi keepsmiling,

There is such a huge learning curve for the parents and it took us a long time to find our groove but you in the zone now! Go, mom and dad!

Trust you instincts and adapt your plan as suits your individual situation. As long as she eats you are on the right path.

Warm wishes,
D


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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
NELLY_UK

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Reply with quote  #123 
You will need a care plan that you have seen when you go to The Maudsley. Otherwise (this is what my team did) they will get the maudsley recommendations and say they are currently delivering that. Possibly. Probably.
Yup that really could happen.

You are legally entitled to a care plan but I can see all your energy is going into d's care. Rightly so. But do request an MHA,once your request is formally made, there is a tight deadline that they have to do it in. This could force the issue.
Like I say, the clock is ticking. If she is too close to 18, some childrens ed wards may not take her.

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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.
mjkz

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Reply with quote  #124 
Nelly, your reply was entirely appropriate.  Spot on!!!
keepsmiling

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Reply with quote  #125 
Thanks Nelly_UK, I hadn't thought of that but wouldn't put it past them to try to jeopardise things by saying they were already doing what the Maudsley wants.   Do you think our GP would have a copy of the care plan?  I am getting so anxious about dealing with the consultant at the moment as I know how different our views are but can't afford to alienate her either, so would rather go to the GP if I can.  Other than that, hopefully they'll send me the latest 'plan' by post, which is what has happened in the past, but it can take a while.  Funnily enough, they have never once put on their the verbal advice about handing back control to D :/
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