7 Tevet, 5778
As I hope you already know from this blog and the book it's about, I strongly recommend that patients and the people responsible for them behave as their own best advocates.
EMPOWER Yourself to Cope with a Medical Challenge has several lessons about that (page 3 and the Action Alert chapter which comes later). Here's another source of help for you. It comes from an experience as recent as last night:
I was up waaayyyy past my bedtime last night. As I was about to sign off Facebook and my PC, someone reached out to me for much-needed advice. I spent over an hour sharing it. Our online conversation just might educate you on how to advocate for yourself or someone else when your mind is simply one BIG blank as you wonder "What should we do?"
Here we go:
Contact private medical care agencies and ask for advice.
She: oncology patient, already did chemo and an immunotherapy trial, she is now trying to get appointments with 2 drs in ohio and alabama. forms getting lost, etc.
Me: In which state does the patient reside?
Me: Call your local Family Services organization ASAP, explain exactly what is needed and insist on getting THE social worker capable of handling the tasks involved. Contact Hopkins general info line, express the needs to be met and ask for advice on how to accomplish that.
She: [the patient] has been treated at [Johns] Hopkins up until now.
Me: Remain fact-oriented. No emotions, no threats. That turns people off even though they're experts in their industry. Fact them to pieces until the patient gets what is needed.
What's the name of the Alabama facility? I might have connections useful for your relative.
She: i just found out, she got the alabama appt - next tuesday. Ohio seems to be the issue. These are her last 2 options.
Me: Contact Ohio department of health and ask for the necessary human and medical resources.
Let the patient know that it is VERY SMART to pay the nominal fee to buy a COMPLETE copy of her medical records so that she can show them to consultants. She should give out photocopies ONLY, never the original papers in her hands.
She: ok
Me: ... Let me know the type of cancer involved.
BTW EMPOWER Yourself to Cope with a Medical Challenge lists fab tips and tricks for coping with illness and messy amounts of paperwork. It even clues you in to worldwide charitable organizations willing to pay for some or all of a patient's specific medical care. All you have to do is to ask for the help.
Here we go:
She: "is there such a thing as a medical advocate/concierge in the USA, where you can give them POA [Yocheved - readers, she is referring to Present On Admission medical diagnosis reporting] and they can do all the running around with documents, asking drs questions, etc (bc the family cant keep up with it all)?"
Me: Yes. You'd need to search out a case manager willing to do the work for you. Start the search within the medical facility's social work office. Read the Yellow pages. Call medical colleges and social work colleges. Think out of the box, too e.g., contact malpractice lawyers and ask why cases are won, what should have happened instead.
She: Thank you!
Me: Keep me updated with progress or lack of it. I can think about whom I know/connections, etc.
Contact private medical care agencies and ask for advice.
She: oncology patient, already did chemo and an immunotherapy trial, she is now trying to get appointments with 2 drs in ohio and alabama. forms getting lost, etc.
Me: In which state does the patient reside?
She: (The answer is not the public's business, so I, Yocheved, have not posted it here)
Me: Call your local Family Services organization ASAP, explain exactly what is needed and insist on getting THE social worker capable of handling the tasks involved. Contact Hopkins general info line, express the needs to be met and ask for advice on how to accomplish that.
She: [the patient] has been treated at [Johns] Hopkins up until now.
Me: Keep asking for help from JHU then. Social workers, patient advocates, discharge planners.
She: will they help her get an appointment in ohio?
Me: Maybe - if you pressure them enough.
She: Thanks!
Me: Remain fact-oriented. No emotions, no threats. That turns people off even though they're experts in their industry. Fact them to pieces until the patient gets what is needed.
What's the name of the Alabama facility? I might have connections useful for your relative.
She: i just found out, she got the alabama appt - next tuesday. Ohio seems to be the issue. These are her last 2 options.
Me: Contact Ohio department of health and ask for the necessary human and medical resources.
Let the patient know that it is VERY SMART to pay the nominal fee to buy a COMPLETE copy of her medical records so that she can show them to consultants. She should give out photocopies ONLY, never the original papers in her hands.
She: ok
Me: ... Let me know the type of cancer involved.
BTW EMPOWER Yourself to Cope with a Medical Challenge lists fab tips and tricks for coping with illness and messy amounts of paperwork. It even clues you in to worldwide charitable organizations willing to pay for some or all of a patient's specific medical care. All you have to do is to ask for the help.
OK, readers, let me know your thoughts about the above!
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