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Saturday 26 May 2012

Ostriches and Rhinos

So the whole "Caloric Conservation Guidelines" from Sheppard Pratt blog last week has produced an enormous amount of debate, discussion and some frank revelations.  I have swung between comments on my blog and Laura's blog, listening to some stories with open mouthed horror:

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.

hearing amazing insights from others:

 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.

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.

hearing genuine fear:

"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.

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.

I have received messages from all over the world on Facebook, been linked and reblogged, on Tumbler and Twitter and generally made a pain of myself bringing it to people's attention in every way possible.

But interestingly, I have the feeling that the medical profession are closing ranks.  They feel that this is a one-off (not true) and that people with eating disorders do require serious and harsh medical interventions (true) and that the patients are prone to exaggeration (maybe, but then again, maybe not).  Whilst I am not arguing that some interventions in eating disorders are invasive, painful and humiliating, as well as being life saving, this type of "Guideline" is open to abuse and can (and does) result in ritual humiliation of a mentally ill person, which is wrong.

My challenge to them is:  If they are ignoring this particular transgression, are they condoning this practice?


  1. I haven't heard of any professional condoning these particular guidelines (because I don't move in the right circles to find any professional who would bother to read them) but I have come across a reaction against those who reject such regimes and concentrate on listening to the patient - they are "weak and frightened of people" and should stop "jollying them along" and send them to places like Sheppard Pratt where they would get the proper behavioural treatment they need to "sort them out". This makes me scream BUT there is a danger for both patients and treatment providers if the reaction to these abuses is the development of a situation where no one is able, for fear of upset, breaking relationships, or the law (which can be pretty asinine) or for lack of resources to do the really difficult but necessary work of saving lives.

    Yes, of course in an ideal world early intervention, loving support from families and good professional care for as long as it takes should mean that such choices didn't have to be made between assertive and unpleasant intervention or leaving the patient to die, but it isn't yet an ideal world.

  2. I agree this is not an ideal world, Marcella, but unless we speak out against such punitive regimes and try and change providers' views of the eating disorder patient, we will never get half way there.

    Until places such as Sheppard Pratt understand the simple things (like punishing someone for not putting on weight EVERY SINGLE DAY when the patient is not in charge of the calorie intake, providing adequate staffing for toilet breaks, etc etc etc), the more complex treatment protocols, as outlined by you above, are never going to be adopted.

    I think I would like Sheppard Pratt to understand that this is not willful behaviour, or rebellion, or attention seeking or any other psychoanalytical "born without a penis" nonsense and begin to understand that eating disorders are a compulsion. They need to understand that recovery comes with kind, calm, compassionate care, alongside a whole heap of food, not through threats, coercion or punishment.

    And until other providers understand that this is a punishment based regime and that the fine line between life saving treatment protocols and ritual humiliation is being overstepped, Sheppard Pratt will continue along as they are, not bothered by some crackpot English blogger who is SO obviously to blame for her daughter's eating disorder.

    I am going to repeat it. Cancer treatment can teach eating disorder clinicians SO much, if only they would listen.

    Deep sigh.

  3. Absolutely Charlotte- Oncology could teach Psychiatry SO much, but for Oncology to want to spend one ounce of its precious time doing so the whole of medicine, psychiatry, social politics, economics and society (including parents, I was clueless for years and FBT didn't help me understand one jot) needs to understand that eating disorders are illnesses just like cancer, not somehow different and less deserving because they are "behavioural"

  4. I don't see these rules as ritual humiliation. They are crowd control and medical protocol. The patient is there to gain some minimum weight and this is how they set it up. A hospital can't manage groups of patients simultaneously in the same way a family would at home.

    Their job is to put on weight - and that is how insurance companies measure success. Frankly, that's our goal at home as well.

    But there is a far distance from withholding family contact and bathing in punishment for "non-compliance" and providing a safe and caring environment where weight gain is expected.

    Hospitalization can be humane and effective stage of treatment or it can be self-perpetuating cycle of failed care -- depending on how it is delivered.

  5. Laura

    Perhaps my phrasing should be a little clearer.

    I see these guidelines as fatally flawed. I see withholding bathing and family contact as part of a culture whereby the patient is regarded as willfully non-compliant, where their eating disorder is the patient's fault and all that matters is that they gain weight every single day or they get punished. That is not treatment. That is box-ticking for the insurance companies, who are too stupid to research the latest treatments and help to stop the revolving door of readmission.

    We are not talking about a third world country here. We are talking about a very well-known hospital (even I have heard of it) in the USA who have humiliated and traumatised a young adolescent, kept her from her family and caused her deep distress.

    This is a First World Problem.

    We did receive humane and effective treatment in hospital. It wasn't comfortable for any of us or an experience any of us want to revisit. It gave us a (rather small) cornerstone on which to build and I know how lucky we were. My dream is that other 12 and 13 year old girls get the same kind of treatment AS STANDARD, not by good fortune.