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Patient Advocacy Help!

From Kate:

Getty continues to do well. We need someone’s help. We have just been told that we are not allowed to give any kind of care to Getty anymore. We cannot suction, we cannot do any of her treatments and I need to know if we have any rights as a family to give her care. No one here knows the nuances of our child and because of two instances from the RT’s here, she might not be here if we had not intervened. Do we have any rights to take care of Getty?????? Please help if you can. Email us at . We are in the state of California and we need to know what our rights are.

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  • Mitzi says:

    Wtf? Let me do some research on this!

  • sarah says:

    That’s terrible! I don’t know anything about your rights as a family but I’m checking a few people for you to see if I can find out anything. I’m so sorry that this tough time is being made even worse!

  • Krista says:

    Texted you two options. File a grievance immediately through Kaiser. They have an expedited process for emergency situations. This can reverse the decision made by whatever doctor has told you that you can no longer provide the care. Or contact a patient rights advocate. These cost money though, but I can find one online for you today if you need it. Just call.

  • sarah says:

    You can also contact the California Department of Managed Health Care. They’re consumer rights organization in CA that helps resolve problems with their health plan.

    Here’s their contact page:

  • Let me call Sutter Memorial – that is insane

  • Morgan says:

    Kate and Mark,
    Hang in there. Praying and searching for ANYTHING to help you guys out.

  • Rob says:

    I’m lighting up every contact I have in healthcare to see if I can get someone’s attention within Kaiser! Stay strong… –rob

  • julie says:

    Board of Supervisors, patient advocate. director of hospital- rattle some cages. i know for my own family they do stupid stuff. they were going to leave my 25 year old brother, brain injuiry on my moms door step. no nurse or anything. we called and it stopped. prayers are with you

  • Jen says:

    Agreed. File emergency grievance with Kaiser, Dept. of Managed Health Care (although usually they want you to complain to the HMO first, then contact them). I’m not an expert in this area, not sure if there are licensing issues or if it is total BS. You certainly have every right to know the basis of this decision and see any policies they have on the matter. The hospital should also have a patient advocate.

  • Jen says:

    Actually, CA DHCS Dept. of Public Health, Licensing and Cert. Division is involved with licensing hospitals. This might be more of a hospital licensing complaint than HMO complaint (DMHC regulates HMOs). I know this does not resolve your short term problem, but just FYI. The emergency Kaiser grievance is probably the quickest way to try and get some help. You can get grievance info by calling member services or at the online website.

  • Cassie says:

    I have no advice but I think it’s absolutely RIDICULOUS that one of THEIR RT’s almost kills Getty, you save her, and then they try to take away YOUR right to care for her?!

  • Praying and sending messages to any contacts I have in the medical field. I am SO SORRY. This is just plain WRONG! Sending big prayers this is straightened out immediately and the holiday weekend doesn’t make it worse……..

  • Andrea Smith says:

    California’s Office of the Patient Advocate has a 24/7 hotline: 1-866-466-8900

  • Nurse Kim says:

    It has been my experience that facilities were able to allow family members to administer medical care, however, it had to be documented by the nurse and there had to be a standing physicians order stating that the pediatrician was aware that the family was administering said treatments. This way the hospital was covered from liability. Unfortunately that can be facility/state specific. I would find someone that is NOT affiliated with the hospital in ANY way, not even a hospital employed social worker. This is completely a liability issue. (or you might just have some nurses with a God complex that don’t like being told what to do) I’m not saying its okay but they can make your life hell.

    If the issue is brought to the pediatrician and the orders are written that you both are able to provide care in the absence of the on duty staff, and it is agreed upon by all parties, then this might solve your problem. However, if it is not, then your best option is to call an attorney and the Pediatric Board.

  • Caressa says:

    Thinking about you guys and keeping you all in our prayers.

  • Can you transfer to UW? Have you tried calling Dr Schroth? I am so sorry, No parent should have the right to care for their child!!! I am actually speechless!

  • Jana, Jerry, and Max says:

    Sending you prayers for a restful recovery and hope your advocacy issues are soon resolved. You’re in our thoughts.

  • Gail says:

    Mark and Kate, as well as checking with patient advocacy and arranging a meeting with the MRP (most responsible Dr)/ Kaiser, start with letters of CONCERN. Also, is it possible to review Getty’s chart? You may have to have the request put in writing by a lawyer. You don’t know what is really being reported about you.
    Parents giving care is usually (as above) under agreement and supervision of the RT, nurse, whomever. As long as parents are calm and co-operative, they should be in the room, even if just observers/comforters. You do not want the situation to get to the point that the hospital can say you need to be removed when care is done.
    Is it possible to check the standings of the 2 RTs? If there have been complaints to their collage/ hospital board about past behaviour, that would be good info to have.

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