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Sunday, 20 May 2012

Crooked bottom punishment?

Got you attention?  Good.  Crooked bottom is an anglicised way of saying Sheppard Pratt.

I was sent yesterday a scan of the Sheppard Pratt handbook, given to parents of a 13 year old earlier this year.  It is a sort of "Welcome to, Treatment Plan, Optional Extras" type document which is bad in too many ways to mention.  Access to patients by parents and carers is strictly limited to 1 1/4 hours in the evening and 3 1/4 (non-consecutive) hours at the weekend.

However this shocked me to the core:

Caloric Conservation Guidelines


For many who have developed an eating disorder, giving up long-standing behavioral patterns such as avoidance of food intake or bingeing and purging is a difficult endeavour.  We have found that gentle incentives are useful in helping persons with these patterns to keep on track toward recovery.  The Caloric Conservation Guidelines involve the loss of certain privileges when certain goals are not met.  The following provides an outline of these guidelines

  • if you are on nutritional rehabilitation, you will be expected to gain a minimum of 0.2 kg (slightly less than half a pound) each day.  On the days you do not attain this goal you will be allowed 5 minutes for the activities of daily living (ADLs) and 15 minutes to dress in the morning following weigh-in.  You must then report to the Dayroom
  • Showers are not permitted on the days of caloric conservation.  This is to diminish calories-burning activity and to provide an increased level of observation.
  • If you do not gain weight for three consecutive days, you may take a shower on the third day.
  • Caloric conservation includes loss of telephone and visitation privileges for the day as well (see telephone and visiting hours for details)
  • In addition to not making expected weight gain, one may be placed on caloric conservation status for non-compliance such as meal or supplement refusal.  Privileges for individuals, or the entire population, may be rescinded by staff if your behaviour or the group's behaviour impact negatively on the unit milleu.

This is wrong on so many levels.  So wrong.

  • hypermetabolism
  • hormones (menstruating females)
  • it doesn't take into account that the hospital are in charge of calorie intake and they may not be feeding the patient enough.
  • ADL - I am assuming that means clean your teeth, brush your hair, go to the loo, make your bed, etc.  Even for one who doesn't care about personal appearance, 5 minutes would seem to require extreme multi-tasking.
  • weight goes up and down over the course of a week - Mother Nature doesn't do averages.
  • denying someone a shower for three days, when they are mentally ill, may be in contravention of  the Human Rights Act.
  • It is wide open to abuse by staff.
  • Is it even legal to take the rights of one individual because of the action of another?  We are talking about a hospital here, not some English public school
  • "Non-compliance"?  If a patient is severely distressed and anxious, surely it is the job of the HOSPITAL to find some way of ensuring nutrition is administered.  By implying that a patient is non-compliant, Sheppard Pratt are implying that the inability to eat is somehow a "choice" on behalf of the individual and does not acknowledge that the patient is severely mentally compromised.  I would love to see whether this kind of "punishment" (and don't even think about trying to persuade me that this a "gentle incentive" for a terrified 13 year old) for "non-compliance" is the norm in other mental health wards treating other mental health conditions.
  • Please note that this is just an "outline of these guidelines".  I would love to see a copy of those full guidelines, as I suspect I am seeing the consumer friendly part of the guidelines here.
To be frank, I am not even arguing on the minutia here.  I am arguing about standards of care for a mentally ill person that is being paid for by the insurance companies or parents.  I am sure I could come up with a whole load more arguments but I feel sick to the stomach re-reading this again and again.


If I heard of these conditions in a specialised eating disorders unit here in the UK, I would be scurrying off to the CQC immediately, waving the NICE Guidelines and the Human Rights Act.   



Now I am not sure about the US but I found a few documents that may be helpful:


http://www.med.upenn.edu/cmhpsr/BehavioralHealthReports.html

http://www.cchrint.org/about-us/declaration-of-human-rights/

http://www.aha.org/advocacy-issues/communicatingpts/pt-care-partnership.shtml

http://www.nationaleatingdisorders.org/uploads/file/NEDA%20WorldWideCharter%204Page.pdf


In my opinion, vulnerable, sick children are being denied basic rights as a punishment for non-compliance.  Is this healthcare?  Is this abuse?  Is this cruelty?  Is this legal?



What I can do is to try and shame Sheppard Pratt into changing this punishment regime immediately.  Please feel free to use this blog, link it, copy it, FB it, Tweet it, send it to your senator, your MP, your friends. 


To quote from NEDA's website the AED Worldwide Charter


Threats, coercion or punishments have no place in the treatment of eating disorders. 






51 comments:

  1. Anonymous20 May, 2012

    just the kind of 'strict behavioural regime' cautioned against in the NICE guidelines, and with good reason even if does make them seem wet to th6se who may not have cause to reflect on how barbaric and open to abuse such regimes can be

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  2. polly eddis20 May, 2012

    I have no personal involvement with anorexia, but with pre-teen daughters I have a vested interest in an awareness in it, in the hope of avoiding it.

    These guidelines have made my heart absolutely plummet. My healthy children couldn't possibly put on half a pound a day, every day, with the best will and appetite in the world. And to punish them for not doing so would be nothing othere than utterly cruel.

    The terrifying thing is that as a desperate mother seeking serious help, perhaps one might be talked into following such a plan,

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    1. Anonymous20 May, 2012

      A desperate Mother seeking help was railroaded into this plan! If only I had known of other alternatives in that moment of medical crisis, I would have a 13 year old daughter that still resepects my judgement, loves me wholeheartedly, and trusts my decisions. This was the only option I knew of at the time and I knew it would be the wrong fit, but my child needed medical care fast, and I was frightened. Now I have a 40 thousand dollar bill and a child who still has nightmares from this experience and does not trust me.

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    2. Your story was what prompted me to write this. It will get better. Needs must when the devil drives and this is not your fault. The treatment for eating disorder patients is at fault.

      xx

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  3. I will be very interested in people's impressions here. These policies are the norm, not the exception and I think they need to be examined.

    By the way, the Worldwide Charter is an AED initiative.

    ReplyDelete
    Replies
    1. Not to sound dumb here, I am a newbie, but what does AED stand for? All I can come up with is the one for defibrillators. Thanks. Trying to get used to all the acronyms.Thanks.

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    2. Academy for Eating Disorders

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  4. Laura,

    Duly amended in the blog to AED. Judging by some of the reactions on Facebook, the Brits are gobsmacked.

    xx

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  5. For some reason this refuses to come up here, so I am copying and pasting it:


    Anonymous has left a new comment on your post "Crooked bottom punishment?":

    just the kind of 'strict behavioural regime' cautioned against in the NICE guidelines, and with good reason even if does make them seem wet to th6se who may not have cause to reflect on how barbaric and open to abuse such regimes can be

    ReplyDelete
  6. Yep. Totally 1970s and 80s...

    "Naughty child makes a decision not to eat because he/she is a rebellious brat. Naughty child threatened with all sorts of punishments if he/she continues to refuse to eat (and to behave like a brat). Once naughty child decides he/she will start to eat again the threat of punishment is reduced or removed."

    Hate, hate, HATE it. Can people see why there are some people with chronic AN in their 30s, 40s and 50s who are so sh*t scared of IP treatment (or any sort of treatment) that they avoid the system?

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    1. Anonymous20 May, 2012

      Yes, exactly this. I'm an adult (over 25) with entrenched AN and no parents/family who can do family refeeding with me... But I'm terrified of going into IP because of the strong possibility of demeaning/humiliating/degrading actions on the part of a treatment provider. This isn't my AN talking - it's a genuine, evidence-based fear.

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    2. Anonymous - can I suggest you contact Miranda (http://miranda-murmursandmutterings.blogspot.co.uk/2012/05/guidelines.html) and talk to her about where she got her treatment. Some places do not have a good reputation in the UK. Perhaps you might like to read Extralongtail's blog as well. I know this is not your AN talking. xx

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  7. Anonymous20 May, 2012

    "Threats, coercion or punishments have no place in the treatment of eating disorders."
    This is all my treatment was; and then my doctor proceeded to set up an MHA due to treatment under coercion. I survived it and wasn't sectioned; I'm still in recovery, struggling at the moment.. but gotten my BMI up from 12, to 15 at home, as once discharged, needless to say wasn't recovered and proceeded to lose all the weight and more at home. I'm fighting the anorexia, but still have nightmares every night about hospital.
    I was on an adolescent unit for a time, this was last year, and they said unless I ate my dinner within the set amount of time the WHOLE GROUP (mainly those without ED's at the time) would not be able to go out on 'rehab' to the cinema that night. Pretty unfair I'd say!!

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  8. Anonymous

    THIS HAS TO STOP. THIS HAS TO CHANGE. THIS IS TERRIBLE.

    Now and again, I blow my top but I very rarely weep at the same time. These practices need exposing.

    ELT

    You are right. At least in the UK, we have safeguards and guidelines and the CQC. Apparently Sheppard Pratt is not unique in the US. This is pretty standard practice. Green steam.....

    xx

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  9. I am that Anonymous! Was trying not to be so dependent on my computer but haven't quite managed a day without it (haven't managed a morning or an afternoon without it actually).

    Many treatment providers, usually based in the old mental hospitals, used to treat AN as cruelly, if not more so, than this in the UK. Some even mourn the passing of such regimes feeling that the baby of full treatment for the ED has been thrown out with the bathwater of cruelty with the patient. I disagree BUT it is possible to see more modern ideas as being too liberal and soft IF one doesn't understand that the clinicians promoting them are reacting against the cruelty in the way of doing it not ignoring the necessity for re-feeding.

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  10. what I meant was that I am that first anonymous, not the second. Second anonymous, I am sorry that your treatment was cruel. Locally to me MUCH has been done to try to rectify this and to make the treatment environment welcoming and threatening and people who have had bad experience in the past HAVE been able to access it - however facing the illness itself is always really really hard whatever help one gets and there are still people who find any pressure to gain weight too much and therefore avoid the help they could have, as well as influential stakeholders who think that a bit more behavioural stuff could do the job more quickly and cheaply - I disagree but I can see why people think that.

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  11. See, when you are treated with threats, or experience punitive regimes, you start to feel really bad about yourself... I know I started to think I must be a terrible person to be threatened and talked to in that way.

    It was so different over the last 6 years... The first time I went to see my psych I was shaking... I was absolutely terrified that I'd be locked up and punished. But it wasn't like that at all....

    To be treated as a valid human being, and both empathetically and sympathetically made a LOT of difference. It certainly kept me in treatment and enabled me to make HUGE steps in recovery from AN.

    For some reason your blog won't let me post as ELT/Cathy, but it's Cathy here. It insists I am called 'Anonymous'...

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    1. You come up as ELT. What gets me is why are eating disorder patients treated as non-valid human beings?

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  12. Charlotte, don't you think that the treatment stems from the opinion of many that this is a "choice" by the ED patient? It is like this gives the medical community the okay to treat the ED patient as a second class citizen with respect to care and compassion.

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    1. Yes, DuckyLou, you are right. It is all part of the "Anorexia is a life-style choice" mentality that FEAST, Laura Collins and the little band of advocates we have here in the UK are trying to change.

      The more people who are subjected to my "Anorexia 101", the more who begin to understand that this is a serious brain arrythmia/brain disorder/brain circuitry dysfunction - whatever you like to call it,- because calling it a mental illness for 20 year has not changed people's opinions in the slightest (and, yes, Cathy, I know I still can't spell it!).

      xx

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    2. When I voiced my concerns about the effect the environment inside SP was having on me, the doctor's prompt response was that this was only my "eating disorder talking", and that I obviously only wanted to leave so I could continue my behaviors as I had before. Wow. I guess I should have expected that to some extent, but no matter what I had to say to her, she only repeated the same response, stonewalling me and attempting to end the conversation. In her eyes their treatment plan was without flaw and could do no harm. Absolutely Terrifying!

      This ordeal helped prompt the most severe period of anorexia in my life. I gave up on treatment after that conversation, started to retreat further inside myself and loose hope in a world without reason. Many of those meals I had tried hard to finish, to the point of choking down gristle, or just swallowing everything whole without chewing, just so the nurses would have less opportunity to antagonize me. Eventually I didn't care about blowing off meals, despite having an overbearing nurse up in my face, yelling at me. If I didn't eat the food the 'right way', I'd have to drink a supplement on top of it anyhow, or get stuck in that chair in the day room until the next meal. You aren't allowed to talk to anyone, and your feet must be flat on the floor. Sucks.

      Also, thanks to not being able to have a BM for a week, I plateaued at some point in my 'weight gain', unable to shower for three days. That was the worst. Never felt more miserable and disgusting in my life. Thankfully, when I finally did 'go', and most certainly did not make weight, I had already gone the 3 days without shower and got to wash anyway!

      I was 20 at the time of this unfortunate stay, and had willingly checked myself in on the advice of the IOP staff and a call they arranged with someone at my insurance. I had no idea that IP was like this, and merely went along with their advice without much thought about it. It also surprised me how quickly after this confrontation with that doctor I began to deteriorate mentally. There didn't seem to be much reason to try complying since it couldn't be done anyhow. At that point I even attempted to avoid any further excessive weight gain by hiding food during snacks to discard of later. I actually was bordering on average weight when admitted, but had severe bulimic tendencies to deal with.

      One day while in the day room, a nurse got in my face about not being at group. I was really confused. Apparently she thought I was meant to be in a teen group, took me by the arm and began dragging me down the hall. I was partly too shocked to respond, but also a bit numb from all the other experiences I'd been having, so I said nothing. This was also bizarrely like a very upsetting experience I had in day care when I was 3.. Anyhow, the second we got to the room and she saw the way everyone in there was staring at us she stopped to ask me how old I was, and let me walk back to the day room. No one understood why I hadn't said anything and let her drag me off like that. I guess some of the patients had a better time then others, dealing with dehumanizing conditions. Some excepted it because they felt it was warranted as a means to force them to put on weight. But we all sympathized with and tried to comfort one another.

      As if my own experience weren't bad enough, there was a very young boy there who came at the same time as me. He cried much of the day, and did his best to please his handlers so he could just go home. Literally, he was counting the pounds until he'd put on enough weight, and had to be told in group that we aren't allowed to mention those numbers. Poor kid. He was in a bad way mentally.

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  13. Anonymous20 May, 2012

    I was the second anonymous and sorry, but will stay that way. I am in the UK, and was treated in the UK.
    This is by far no means the worst; a good friend who I met in hospital had been to another unit - where, get this: she was not allowed to leave HER BED - no shower, had to use a pan, because her weight was too low. And yes, I do understand that she should be on complete bed rest, but cannot see how being unable to have a bath/sit down shower with someone washing her, or being wheeled to go to the toilet, is not allowed?
    It makes me so sad. My experiences really hurt me, and still do, but I'm not the only one and won't be the last to go through this sort of thing. My heart goes out to all of you for your support

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    1. Anonymous20 May, 2012

      &: I'm not over 25, like some of the others -I'm 19.

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    2. Anonymous

      Bed rest sucks. I had to be on bed rest last summer and it is very undignified. I was in the oncology ward and because of this, I suspect, got wonderful, kind, first class treatment (especially as I refused to poo in a bed pan!). Looking at Laura's blog, nowhere is the difference more clearly defined. In an oncology ward on bed rest, it is not viewed as a punishment but as a medical necessity and, whilst traumatic (and it is traumatic), you are made to feel as comfortable as possible and it is definitely not a punishment.

      I have given you a reply above about contacting Miranda. She was 19 when she went in to treatment. I played a small part in getting her help and I do want to validate your fear. However, she did not get the sort of treatment you are describing. Neither did my d. Can you tell me where you were? xx

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    3. Hello Anonymous - do get in touch with me. Very happy to help and advise in any way I can. Can also put you in touch with some real help that you might benefit from. My blog is http://miranda-murmursandmutterings.blogspot.co.uk/

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  14. That is terrible. ED patients should not be treated as being sub-human, nor should the be denied certain things if they do not gain weight daily. As you mentioned, weight fluctuates and even if an ED patient IS eating everything available there is always a chance they will not gain weight every day. Ridiculous.

    I have been IP in the UK, and visits were restricted to an hour each evening, often was interrupted by 'snack time'. This meant my family travelled for 1.5 hours each way, so a 3 hour round trip for a 45 minute visit. Terrible experience, but I cannot claim it was anywhere near as awful as that handbook suggests. I too was made to sit in a wheel chair 24/7 and not allowed to walk the 10 meters to the toilet, instead having to wait for a Nurse to appear to take me which felt ridiculous to me.

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    1. Meg - bed rest as a medical protocol is fine. If you felt that this was in some way punishment or an exercise in control by the staff, then this medical protocol was not explained to your properly or enough or was being done wrong.

      I get the waiting for a nurse to walk you to the loo and wait while you sit down - you do feel an idiot and I was like "Thank you very much. You can go now!". However, I was aware of how very ill I was and how "just spending a penny" was fraught with the danger of me passing out (again) and hitting my head (again) and was therefore resigned to it.

      Looking back, it wasn't what I wanted (humiliating and needy) but it was what I needed.

      xx

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    2. Oh no I didn't see it as punishment, just as an over reaction and it left me feeling nothing but an inconvenience to the staff because I wasn't allowed to move/breath/look unless told to. Wheelchair obstacle courses were frown upon as well, sadly.

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    3. LOL - wheelchair obstacle courses bring joy! xx

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  15. Sadly I'm not gobsmacked. I have had many admissions in an Australian public psych ward in a major hospital that has a few beds for their eating disorder 'program'. The program is nothing special - meal support and non-existent groups. But the rules are draconican and I was treated worse as a 'non compliant frequent flier'. I spent several admissions restrained by my wrists to the bed - I was not allowed ANY time to bathe or dress or clean my teeth, I was allowed to get dehydrated and dry mouthed, filthy, was left sitting in a bedpan with no way of getting off it myself (no hands) etc. All this for being scared of the nutrition and being 'at risk' of pulling out the line to give me TPN. I also had lost ALL my clothes, ALL my belongings, was not allowed a watch or a brush or shoes or socks, not allowed a book or magazine to read, or to write... it sucked.

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    1. faithandmeow

      Tell me this wasn't recently - please? xx

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    2. Thankfully I have been out for two years now, the longest ever. It was about 2-3 years ago. xx

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    3. Hang on in there, faithandmeow. Keep on keeping on. xx

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    4. Thank you. You know what, although what they did was cruel, they saved my life. And I owe them that. I'm alive today, I didn't want to live then, but I do now, and I'm glad they gave me the chance to discover this. But also I'm so lucky for friends who never gave up on me. Thank you for your support :)

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  16. Charlotte, This is the only IP hospital my D was at - when she was 15.
    They have recently been part of an NIMH grant using FBT and comparing to their old form of family systems therapy. When she was there ten years ago, all I remember is that my D became so distressed and when discharged, she took an overdose of her medication because her anxiety was sky high. I still remember the Dr wanting to send my D away saying that she was not safe at home. But the reality is that they did nothing to include family as her greatest support and they discharged her way under her accurate and fully weight restored weight. She was in the throes of panic and serotonin overload having gained 15 pounds so quickly, and we were all being persecuted and blamed.

    She also learned many ED tricks from the others and later she told me that when in their partial program, she waterloaded before getting weighed.

    I still have nightmares about where they wanted to send my D - to an institution for adolescents with severe mental illness - not an eating disorder program at all.

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    1. Wendy

      My heart goes out to both you and your daughter. Writing this blog has opened up a huge outpouring of horror and sadness. It makes me more resolved to try and change things.

      xx

      Delete
  17. Oh my. Reading this made me so sad. And not just your blog post Charlotte, but many of the responses from people who have gotten sub par treatment.

    Being a dietitian for those with eating disorders myself, I automatically know to look at weight trends over a few days versus a weight change from day to day. I typically shoot for a weight gain of 2-3 pounds per week, but the day to day gain is not always the same. Additionally, to deny someone a shower and limit ADLs to just 5 minutes per day does not make any sense from a weight gain standpoint. If these things alone are having a significant impact on the amount of weight gain, the meal plan is likely not high enough. A meal plan for someone who needs to restore weight, can get quite high and can take some time to get to an a level where it will begin to facilitate weight gain. I could go on and on and on about how many of these things are not appropriate and how there are many other ways to help someone restore weight and over come their eating disorder by still allowing someone their dignity. I would be writing all night if I continued though.

    If these guidelines are indeed true, I hope this promts some change and I'd like to thank you for posting. To be honest though, I hope that somehow the scan you got is inaccurate.

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  18. Sarah

    You second paragraph sums up exactly my understanding of restoring regular nutrition and working towards a target weight range. Thank you. I too could have gone on and one, but did not want to get too technical because I was more focused on the punishment of a serious ill child (in this case) for not being able (rather than willing) to eat.

    They are true. They are on the last page of the Sheppard Pratt inpatient handbook. There are other horrors that need exploring as well but this was the first, least technical and most horrifying example of the way patients are treated without kindness, empathy or an understanding of the seriousness of their illness.

    The responses from patients are not only here but all over the internet - I seem to have hit a nerve. I am actually really upset about all this and have trouble not boarding a plane and standing outside SP with a placard. However, it is obviously not just SP but a widespread malaise within the eating disorders treatment "industry" and I need to raise awareness and begin to muster the support of all those involved. It seems to me that I am beginning to give patients a voice, that has been dismissed before as the ramblings of the mentally ill.

    This really has to change and fast. Susan Ringwood of Beat told me on Friday that 40% (yes 40%) of people who ring their helpline are not under any medical care at all. This may explain why people are not seeking treatment (alongside the stigma and shame). Here's hoping we can change things.

    xx

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  19. Anonymous23 May, 2012

    Hi Charlotte:
    As the naughty Momma that leaked the handbook to you, I thought I would mention some things that were not in it. I did not know until after my young daughter was released that on days she was placed on caloric restriction (always due to failure to meet min weight gain- never for any behaviorial or refusal to eat reasons) that the child was forced to have her 5 minute potty and shower time watched by an attendant. My daughter was very modest and very uncomfortable.
    Also bathroom breaks were scheduled each day. To use it any other times was very difficult. Twice they served fried chicken which gave my DD diarrhea. The second time she ate it, she pooped her pants while waiting for approval to use the bathroom. They had her remove her soiled underpants and wear jeans with no undies the remainder of the day. She was not permitted to go shower and clean herself until shower time the next morning.
    While they slept each night, an attendant would enter the patient rooms every 15 minutes to check on them. My DD had a room alone the first week- sometimes that staff-person that entered the room at night was a male attendant.
    My DD has been away from SP many weeks now, she still has nightmares most nights where she dreams she is still there, alone in a scary, punative, mean place abandonded by those who loved her. I will never forgive myself, and will do everything I can to make sure other children do not end up with that same broken heart.

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  20. Anonymous Naughty Momma..

    I think the whole not being allowed to shower and potty on your own is a medical protocol thing. They are worried that you are overexcising in the shower or waterloading or might faint. THIS is where having a parent on the team makes all the difference. Having your mother sitting in whilst you are having a shower is somehow not so bad, as a strange nurse. I understand safety etc is of primary importance but why exclude the people who would be the most helpful and least intrusive and psychologically damaging for a young girl?

    Approval to use the bathroom? What? I have had hints of this in other places on the internet. The way your d was treated was barbaric - no other word for it.

    We had male nurses on our wards but we had a mixed ward. Our male nurse was the most fun you can have with your clothes on - he would muck around on the "Daily Activities" Board

    8 am Breakfast
    9 am Into the Tardis
    9.30 am Scuba diving with Dolphins in Miami

    He was bliss. All our nurses are CRB checked over here and, in adolescent units, have even stricter background checks. They always did the checking in pairs.

    Hug that little girl from me.

    xx

    xx

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  21. Oh, my. I could write a book about my d's experiences at the most recent place she stayed. Would include an episode of not having access to a bathroom so logically used a wastebasket and was criticized unduly about that. This place, to its credit as well, did all they could within the staff's ability to work with a severely entrenched disease coupled with a brain disorder.
    However, that said in response to a couple of recent above comments, here's why I'm back:
    I think the structure that many of us as parents have experienced when we have chosen to send our loved ones to residential treatment was developed in the days when the home environment -- i.e. Mom -- was regarded as toxic. And, although many places are now claiming to involve the family more, I think it's lip service to a great extent and will continue to be until a thorough program as part of the treatment is set up at each and every place for no additional fee similar to that incorporated in the I think it is a week program offered by UCSD (Dr. Walter Kaye et al). Until this happens at every residential facility, the staff are going to be totally unaware of what is needed in the home environment and of the parents and siblings etc. to assist in the recovery of their dear loved one. Not all families can go the Maudsley route, unfortunately. As a single parent way back when, as much as I wish I could turn back the clock, there's no way I could have taken a leave to care for my daughter for the months that it would have required.
    Anyway, my two cents on the environment. Supervision is necessary for some -- mine would drink water from the shower spigot to up her weight thus messing with her electrolytes, too, and endangering her life. She also became adept at figuring out where to purge outside of the bathroom. ED is wily, no doubt about it.

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  22. Anonymous28 May, 2012

    I have come to understand my ED is an extension of my OCPD

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    1. Anonymous28 May, 2012

      Sorry. Major computer issues here. I'll continue....

      I have come to understand my ED is a partner to/extension of my obsessive behaviors (OCPD/OCD). When I am in the throws of my ED I obsessively perform body checking rituals for hours in the day. I try on ALL the clothes in my closet checking for looseness or snugness. I count calories I'm about to eat and recount calories I've already eaten multiple times during the day gaining comfort from knowing and re-knowing what the calorie count is. I exercise obsessively... burning 1500 calories by lunch with 'emergency' bouts of exercise in the afternoon and evening when I have an inability to rest or feel I'm bloated or too full. On top of the exercise, in my worst moments I begin purging or abusing laxatives if I consume more than 1000 calories in the day. All of this is in an effort to feel in control of my environment and last year almost drove my therapist to push for hospitalization.

      My control rituals tend to cycle through various things.... obsessing over whether I'm an alcoholic (alcoholism in the family) resorting to counting alcoholic beverages my relatives drink at a party and purging if I've consumed 'more' than what I consider to be an 'acceptable amount' of alcohol.... worrying about and hoarding money for future emergencies..... inspecting my house for bugs, bagging bugs for the exterminator to examine and crawling around the foundation of my house spraying Raid to kill the bugs.... and body checking, calorie restrictions and exercise bulimia behaviors..... these are the dominant areas I exact control in my life with other areas I dabble in here and there.

      When my husband and neighbors caught me bagging bugs, vacuuming the baseboards, window sills, under beds for 2-3 hours EVERY day and crawling around the foundation of my house spraying Raid at the imagined bugs that I felt were chewing the wood frame and might cause my house to fall down around me no one questioned the fact that I was in dire need of help and was suffering from a mental disorder.

      But when I struggle with disordered eating behaviors, which in my mind incurs the same anxiety as my bug fears, people think I'm overly concerned with body image, losing weight and am acting in vain ways and I SHOULD JUST STOP.

      I'm in recovery mode and am doing fine now though sometimes I remember fondly the feeling of euphoria I experienced when I was in such rigid control of my food and exercise behaviors and I, wistfully, try to experience that same rigid control again. But when I'm in recovery, not obsessing, I can't even force myself to restrict calories like I can when I'm clearly struggling with the obsessive natures of my disordered eating.

      This has proven to my husband and myself that the eating and food and exercise issues are just another aspect of my obsessive issues and is definitely part of a mental disorder and not a cosmetic issue. I get so frustrated when I hear other people tell women to just get over it and accept their bodies the way they are. I often wonder if that person who is perceived to be too skinny or vain is suffering from an ED and really has no control over her obsessive food thoughts.

      I have a lot of respect for families and young women who go through this struggle. I was loosing hair, my blood pressure was dropping and weight was dropping and my therapist and husband were very concerned as was I. Somehow I managed to recover with their help and I'm lucky. I can't imagine what this would be like if someone were punishing me for my behaviors because they are certainly not willfully intended. It is something that has control of me... not the other way around.

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    2. Anonymous

      So much to say to you. So much. What an amazing post and thank you for taking the time.

      First of all, I am sorry about the OCD - it must be incredibly difficult to live with. I have observed that OCD symptoms are exacerbated and made much worse by starvation. I also notice that patients without OCD symptoms prior to their illness develop symptoms very similar to yours whilst malnourished. A lot of times, these symptoms disapate or retreat to a more manageable level with full nutrition.

      I made a film about it last year (http://www.youtube.com/watch?v=_b-61AUp2V8&feature=plcp) and this page on the ATDT Hall of Fame may help you understand that you are not alone in experiencing these symptoms and, I suspect, the euphoria (https://sites.google.com/site/aroundthedinnertablehof/home/dealing-with-physical--psychological-symptoms/ocd-and-ritualistic-behaviors).

      I suspect too that the "control" we hear so often about in describing such an anorexic pattern of behaviour, is more about controlling the fear and anxiety, rather than the anorexic trying to control other people or using the control as a punishment for others. Extreme fear leads to extreme measures.

      I think you are amazing in being able to distinguish so clearly between yourself and your eating disorder.

      ." I can't imagine what this would be like if someone were punishing me for my behaviors because they are certainly not willfully intended. It is something that has control of me... not the other way around."

      Some people do fall down the rabbit hole of an eating disorder because they go on a diet because they are unhappy, or fall victim to the "You can never be too thin" guff or other environmental pressures that are put upon woman, as a whole. However, the pursuit of thinness is not what I have observed. I have observed extreme anxiety (often coupled with OCD - my d had a complete obsession with all numbers - calories, clothes sizes weight) and the way that patients can express this extreme anxiety is to play on the societal fear of getting fat.

      Catherine of Modena was all about visions of angels and God - not about being a size 00.

      Sigh. Keep on keeping on.

      You sound as if you have a one in a million husband there!

      xx

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  23. Anonymous29 May, 2012

    Thank you for your response Charlotte. I have enjoyed reading your blog and the links you provided. I am so grateful that you and Laura and so many others are out there doing what you're doing. I'm happy to know that some other woman or girl will be able to benefit from such strong women's work.

    As for your comment....

    It was the bug obsessions when I was first married that enabled me to later see the ED for what it was. I battled the bug obsessions for a year. I would spend hours in the day crying about this preoccupation with bugs, calling DH at his office several times a day, and crawling around the foundation of my house spraying Raid while sobbing at how crazy it all felt. During all this anxiety and fear about bugs I also endured a sickly feeling (typical physical response to anxiety) and usually ate only a bagel a day and drank tea. I crawled to my husband one night begging for help and we went to the doctors and I was on meds after that. I knew this was out of my control and over the top of what's normal and the meds worked. I was fine for a while.

    Through all the future obsessions I suffered with I managed to pull through with doctors, meds and my husband. When the disordered eating surfaced (sans other obsessive issues) I was able to understand the food issues were EXACTLY like the bug issues, the mold issues, the money issues and everything else I had previously obsessed over.

    That is the only way I was able to distinguish so clearly between myself and my eating disorder. OCD had laid the pathway for me that would later help me clearly understand my ED.

    As for my husband being a one in a million... he didn't want any part of me in the beginning. He began to get an inkling at my craziness while we were dating and he threw his hands up, running in the other direction and told me "I don't want to handle you and your problems." In his defense.... his mom is schizophrenic and he had already done his part to attempt to save a woman in trouble. He had more than his share of insanity.

    But he liked something about me enough to stay with me and for that I'm grateful.

    I'm curious about something...

    I previously used a pro ana/mia website for triggers and sustaining my behaviors but.... I really don't want to do that anymore. I've been behavior free since October. I am a cyclist and runner and am training to run a marathon in February. I can't do this kind of activities if I'm restricting and obsessively exercising. I clearly need the nutrition balance to sustain that level of physical endurance.

    Lately I find I spend a lot of time remembering what it was like to be in a anorexic or bulimic state and sometimes I really miss it. My husband doesn't understand that kind of talk and I have no real life friends I can talk to. I see my therapist once every three weeks now but... I'd like a support group for voicing these kinds of thoughts. The same way I used my pro ana/mia website for support... just in a healthy way this time. I moved to another country since I was being treated for the ED last year. My therapist is sort of new to me and we get on fine but I would like a friend or group to talk to about these kinds of regretful thoughts. Preferably one with a connection to the OCD/OCPD.

    Do you know of an online recovery support group you can direct me to?

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  24. Anonymous

    I don't know of any such groups but would suggest you read edbites and extralongtail blogs. They may help you make contacts. xx

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  25. I am absolutely appalled at this model of treatment, which essentially punishes people with mental illnesses for having mental illnesses. It's disgusting. And, while I agree with Laura that it is too prevalent - this model should be entirely eradicated - I'm not sure that it's the "norm." I go to a treatment center that works pretty much exclusively through positive reinforcement. And, when something has to change for a patient's health (e.g. if someone is not healthy enough to exercise like they have been or like they want to), the staff members are all very careful about how they communicate this, in order to make it clear that it is about support and safety, not punishment. While there have been times in the past - with other treatment providers - that I have felt punished for my eating disorder, I can honestly say that I have *never* felt punished or blamed for my e.d. by my current treatment team, and I've been working with them for years (and have made tremendous progress). There are people and treatment centers out there that are working very hard to change these antiquated models.

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  26. Anonymous24 July, 2012

    I've been there. It's terrible.....there was a "mindful movement" group some days and the next day almost no one made weight. I was on the phone with my parents and they disconnected me because I was on restriction for not gaining enough weight. It's hell there

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  27. The first time I was in SP (my first treatment) I was 14 years old (and have been back a few times since, as well as other better more *humane* centers). Their weight gain protocol is absolutely ridiculous-- it makes no sense. They say: gain .2 kilo per day as if your body is capable of being that exact and accurate and mechanical. Even if one day I gained .4 kilo andthe next day I gained .1, I was still punished even though I was above my ideal progress line. Not to mention everything that went down when my metabolism revved up. Yes, I was unable to shower, but that was the least of my problems at the time. Being a kid with severe anxiety away from home and my mom, who I needed desperately, sick and in a mental hospital surrounded by people of all ages/co-morbid issues, including bipolar with psychosis, DID and substance abuse, etc-- not meeting weight gain properly (despite eating my meal plan and drinking my supplements) meant that I was neither allowed to see my mom or talk to her on the phone. Oh-- and it never helped me! I never made any progress with my eating disorder and only relapsed shortly after. I am no exception; i know girls who have cycled in and out of this program for years. The only reason I went back is because that I knew that if I went to SP there would be no expectation of me to give up my eating disorder. That place is a mess. This is only the tip of the iceberg-- I can say SO much more about my experience there. So much more.

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  28. Anonymous08 July, 2013

    I was recently (3 months ago) in SP inpatient and it was really though. I think the .2 kilo weight gain per day is RIDICULOUS!! That's almost 4 pounds a week!!! The only way poeple are able to ever make the required weight gain is because they stuff you full of food and up to FIVE supplements a day!!! I don't even think it's healthy to gain so much a day, not to mention how hard it is for someone with an eating disorder(I would think it would be hard even for someone without a ED even, but even more so to someone with a n eating disorder) to gain so fast. I was in there 3 1/2 weeks and came out 15 pounds heavier, with more to gain. There's a reason most people keep going back again and again. If it worked, people wouldn't have to keep on going back.
    It's like a factory; once you're in the system, it's very hard to get out. You get thrown in, go through inpatient, PHP, IOP, outpatient... If you malfunction at any point they throw you back on at the beggining.
    Everyone should be very happy to hear though, that they have changed their restriction rules significiantly. There is no more weight restriction (thanks to many, MANY complaints) and I hear from friends that it is a lot better now.

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  29. Anonymous30 June, 2014

    Okay, let me just say a couple things. I spent a consecutive six months at CED (center for eating disorders) at Sheppard Pratt, and then after three months went back, and at this moment I am in the intensive outpatient program. I know that people are probably going to look at that and use that against me, but let me say that many people come back to ANY treatment center, and I know this is true because a lot of people who come to CED have come from a variety of other treatment centers, and their homes ranging from Florida to California to China and Greece. ( Let's remember that this place is in the middle of Maryland) People come from all over to go here, and there is a reasons for that - because it helps. 99.9 percent of people who have been to a different treatment center say that this place is so much better and helps so much more than their other treatment centers. And almost none of the things in the pamphlet are followed. Also, everything can be given a doctors order, so if a patient is having trouble, doctors can give them an exception, and I've seen this happen A LOT. So in short, you can't bash something unless you've been there and you've realized that it can and will help if you let it. Thanks for listening, I just thought that I would put this out there. (Have a good day!)

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