World Wide Charter for Action on Eating Disorders
Have you heard about the World Wide Charter for Action on Eating Disorders?
The Charter was created under the sponsorship of the Academy for Eating Disorders, with the input of thousands of concerned people around the world. It sets out some principles that seem like good common sense, and one of them is the right of caregivers to be informed and involved in a loved one's care.
I am part of the AED Patient/Carer Task Force, the Worldwide Charter subcommittee, and the PFN at NEDA that will be helping to introduce the Charter in the US. I'm curious about what the Charter will mean for parents. So tell me, fellow parents, what does the Charter mean to you?
Empowering? Toothless? Inspiring? Incomplete? Shocking? Helpful?
The Charter was created under the sponsorship of the Academy for Eating Disorders, with the input of thousands of concerned people around the world. It sets out some principles that seem like good common sense, and one of them is the right of caregivers to be informed and involved in a loved one's care.
I am part of the AED Patient/Carer Task Force, the Worldwide Charter subcommittee, and the PFN at NEDA that will be helping to introduce the Charter in the US. I'm curious about what the Charter will mean for parents. So tell me, fellow parents, what does the Charter mean to you?
Empowering? Toothless? Inspiring? Incomplete? Shocking? Helpful?
Great work! Can we send it out to people or is it still a work in progress?
ReplyDeleteanne
The Charter is being introduced all over the world, and NEDA is hoping to have it ratified in all 50 states next year.
ReplyDeleteYou can "sign" the Charter at the website below, and watch that site for news on how you can get involved:
http://www.aedweb.org/public/WorldCharter.cfm
HI Laura,
ReplyDeleteThis is a very solid beginning and I am grateful to see its completion. Its existence validates the diagnosis and treatment of ED's as real and tangbile, needing to be handled with the same delicate and respectful professional approach as all other illnesses. I found the wording of this Charter to be substantial and well defined. There are a few areas for the group to consider in its refining, which I respectfully submit here for consideration. Good work and thank you for being such a strong and productive advocate! Hope all is well-
Sondra
Preamble. I would question the term Mental Illness and ask that it be defined: Chemical, biological, emotional?
Preamble 2. States the obvious, with no teeth to back it up. “Requires a partnership”? How about “Demands a partnership”. And this charter should include some recognition as to who leads this partnership Physician? Therapist? Parent? I found that the bigger battle was not the battle of having everyone involved verbally commit and agree to a team approach The biggest battle was implementing it. Doctors do not want to play with others and they do not want to be led. But they will affirm vehemently your desire to create a team and be a part of its important existence. They rarely comply though. Leading such a team effort was impossible for my husband and I as parents: emotionally involved, panicked, desperate, uneducated in the realm of medicine, ED’s, mental illness. And it was frustrating (and at one time dangerous) to wait for one of the professional parties to pick up the ball and run with it. They appeared not as invested in it as we did. And so the team floundered. To this day, our daughters Therapist has rarely if ever collaborated with the physician!! In fact just last week he announced with some pride that he Finally spoke with the medical doctor! After 8 months!!! And only because he was ‘confused” (read skeptical) about the information we were providing him regarding Chelsea’s medical status.
Rights I. Include the word respectful in the heading. No one should have to face professional sarcasm as part of their struggle. And although the word respect shows up in a subsequent bullet under this right, inclusion of the word in the title demands the readers attention.
Also having the term “treatment options fully explained” is too vague and broad. What is really required is a complete and comprehensive array of options, even those the physician does not personally agree with, but are valid and substantiated. Our first pediatrician gave us what she perceived to be Chelsea’s treatment options, none of which included Maudsley, or pharmacological interventions, or outside network treatment/research centers. Many of the options we explored and found useful to us, I was left to discover on my own. I am not certain how this intent is captured in such a charter as this, but it is a significant concern for me.
Right III. Include verbiage on the right of having a detailed and easily understood financial accounting of the cost of services prior to service delivery, which includes an explanation of any subsidized funding or medical insurance coverage. Too often we discovered that the care we had agreed to was not a covered service or had other types of administration that would have been covered had we chosen it, this included pharmaceutical options as well. Much of Chelsea’s care was out of pocket because we did not have the opportunity to discuss or choose other options. Many times we learned that because the payout rate for physicians/therapists was so low on some options, they simply choose the non-covered version after assessing the ability of the patient family to pay out of pocket. other times, becasue the coordination of options did not coincide, they were disallowed by our insurance provider.
Right IV Third bullet is very concerning! “The precise nature and degree of carer involvement should be based on the wishes of the patient and their carers.” If my daughter had her way, we would not have been involved at all at the earliest phase of her diagnosis and then again as we began the Maudsley approach. I understand the intent the drafters had, with regard to older ED patients, but a very scary charge.
Sondra,
ReplyDeleteThis is fantastic stuff. I'm printing it out for discussion with others involved with the Charter. I, too, have been concerned about one particular thing you mention and hadn't even thought of several of your points. THANK YOU!