Monday, 21 May 2012

Guidelines

I am about to reveal a TERRIBLE set of guidelines which has left me and a few others utterly speechless.

Charlotte bought it to my attention - and Laura too.

This is word for word what someone sent Charlotte and her comments are at the bottom:


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  Privileges for individuals, or the entire population, may be rescinded by staff if your behaviour or the group's behaviour impact negatively on the unit milleu.

Charlotte's thoughts:


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.


I cannot believe that this type of "care" for eating disorder patients is practised, let alone widely. I am extremely distressed on behalf of the parents who sent me this and any other parents whose children are in a treatment facility that uses punishment, threats and coercion.

I am horrified and ashamed on behalf of the patients, some of whom are very young children, at this, IN MY OPINION, barbaric and abusive treatment of sufferers from the most lethal psychiatric illness. 


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. 

My thoughts:

I feel as angry, upset and frustrated by this as it humanly possible. What part of denying someone the opportunity to speak to/seeing their parents/family on the phone, having a shower is helpful? People in hospital receiving inpatient treatment for eating disorders are there to get better - they are vulnerable people and often pay huge amounts of money for the care they are receiving - they are not there to get worse and live as unhygienic invalids. They are patients NOT prisoners and often (but not always) there through choice and should therefore be treated with the utmost respect, dignity and care.

Looking back to 25 months ago when I was an inpatient, I was only once or twice told that if I didn't get a grip and put on weight etc then I would be moved to somewhere else which would be more vigorous and strict, and I also wouldn't be allowed to go home at the weekend - but NEVER EVER was I told that I wouldn't be allowed to have a shower or make my bed. 

1 comment:

  1. Thank you Miranda. I was so deeply busy in my child's recovery, I never knew until today that you posted this blog about what happened during her treatment. Much Love to you, Lauren

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