Charlotte Bevan, fierce advocate and activist, died at home January 13, 2014. A mother of teenagers, wife of a farmer, parent advocate for parents of eating disorder patients, major contributor to the Around the Dinner Table forum, writer of short information films, Expert Carer for the Eating Disorders team at the Maudsley and Breast Cancer patient.
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Friday, 13 July 2012
It's up to YOU.
So the Fairy Blogmother has gone off on one and quite rightly too.
Your diagnosed depressed child is lying on a gurney in A&E (ER), with blood pouring from his/her wrists after a suicide attempt. A clinician comes over to you, takes your hands, places them on the artery above the cuts and says "Press here until the bleeding stops. If it hasn't stopped over the next few days, bring him/her back and we will have another look."
Would you meekly accept that as treatment and trot off home?
Or would you raise the roof, contact the press, write to your MP, senator, President, Prime Minister? Would you tell all your friends, your local newspaper, paste it on your Facebook page, tweet it? Would you contact the B.M.A.? Would you phone your lawyer? Would you just NOT STAND FOR IT?
If the answer to any of the above is yes, then why the heck are you accepting exactly this sort of treatment for your child's eating disorder? It is time to get a backbone and stop accepting substandard treatment for your children. If you don't stand up and shout, nobody can hear you. If you are being silenced by other people's prejudices and ignorance (and yes, I do include the majority of clinicians in the "prejudiced and ignorant" category), you are effectively condemning eating disorder patients to a steri-strip to treat a broken leg.
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hmmmmm - interesting analogy for me. What if the doctor did the basic bandaging and THEN said to go home and report back if there were any further problems?ReplyDelete
What if the alternative was to send your child to a mental health hospital where the patients have ready access to knives and the doctors believe that cutting is "about control" and the best way to solve it is to get rid of the "problem" i.e the parent?
What if the hospital clinician told you that the evidence suggests that patients usually do better at home with their loving parents dressing their wounds than with strangers who can carry all sorts of infections and don't know then best?
I agree totally that patients should not be left to bleed or starve to death either at home or in a hospital (or at vast expense in a spa-like residential treatment centre for that matter) but, to switch analogies to your picutre, if carers are to use that backbone rather than break it, they need manual handling guidance, and sometimes hoists or pulleys, or another pair of hands, or an expert transport system to do it for them until the patient is well enough to help a bit.
This study, http://www.kcl.ac.uk/nursing/research/programmes/PatientCarerExperience/enhancing-the-role-of-carers-in-the-outpatient-chemotherapy-setting.aspx and its implications for other fields including eating disorders, fascinates me.
Oh Marcella, would that we be so lucky as to find a doctor to do basic bandaging.ReplyDelete
My point is that if some of us don't speak out and demand it, no one is going to get even a whiff of a bandage.
My fear is that parents are too ready to believe that this is somehow their fault, or that they have done something terribly wrong and that people like me are just mad internet ranters with radical tendencies. The louder the voice, the more back braces will become available.
but with FBT the doctor (or rather the therapist who is the team leader) doesn't do the bandaging (or the feeding), he or she gets the parent to do it with no advice on the practicalities because it's the parent's job.ReplyDelete
I do so agree with you that we need to stand tall and cry for better treatment, but that needs to include all sorts of options for the varying conditions presenting and the varying abilities of the carers and that isn't cheap.
I agree it isn't cheap but neither is chemotherapy.ReplyDelete
You are so right Charlotte. My current frustration, though, is towards doctors who see a child lose weight and or "fail to thrive" and not only do not do anything about it, but falsely console a concerned parent. GrrrrrReplyDelete