Ring Around the Medical System

These past couple of years, I have been playing Ring-A-Round the Medical Beaucrasy.  No matter how hard I try I still keep running in circles. As families we are trying to make sure that we do what we are supposed to do to manage our childrens/adults with disabilites care.  I document, fight, and think I have it problem solved only to find it wasn't fixed or another roadblock happens.

I decided to write my frustrations and document my journey to get Becca help.

Becca told us it hurts to eat and "things" are getting stuck behind her sternum in her esophagus.

1. Becca says it hurts to eat and things are getting stuck in her esophagus and its sitting on top of her Nissen fundoplication.
2. I take her to her primary care doctor who puts in a referral for a GI doctor.
3. Called several in network GI providers. 
4. Checked on a Pediatric GI due to Becca's stature.  Denied to see because she is over l8.
5. Referral to out of network provider. The Doctors office put in a Prior Authorization for Out of Network Referral
6. Insurance company denied Out of Network GI Doctor.
7. Appealed insurance company denial.
8. Insurance company approved.
9. The Out of Network GI triage  called said they will decide if they want to see her. They will let me know in 3 to 4 weeks.
10. Out of Network GI triage said they did not feel she needed to be seen. She does not have a GI History is their reasoning. (Becca saw GI for 16 years and had a GI, 2 GI surgeries etc. and l7 years of a gastrostomy tube).
11. Insurance company Out of Network authorization ran out.
12. Reapplied for Prior Authorization Out of Network appointment.
13. Resubmitted information to Out of Network GI.
14. Insurance company denied the Prior Authorization.
15. Wrote a letter and got the insurance company Case Manager involved.
16. Got approval from insurance company to see Out of Network GI.
17. Got a phone call that Becca was scheduled for a scope the next week (without seeing the doctor?)
18. Called the GI office and asked if it is normal to not see the doctor before a procedure.
19. They explained that the Doctor felt this is what needed to be done and they don't always see the 
20. patient first.  I explained that Becca has complex needs including heart problems and  bleeding  disorders and they need to plan to do anything. They haven't even talked to her or us about the problem.
21. The Office called to say they needed proof that our insurance company approved the out of network.
22. Faxed the out of network approval out.
23. Called to double check so can make the appointment.
24. Had to resubmit to see the doctor at the GI triage
25. GI triage had to talk to Becca's primary care provider to see if she still needed to be seen as it was over a year ago.
26. Primary Care Doctor's office resubmitted paperwork
27. Triage Called and scheduled the appointment
28. Called the Health Insurance Company Case Manager to see if the referral is still good. 
29. Resubmit the changed Out of Network Prior Authorization date.
30. Got the Prior Authorization Approval Letter and called to make an appointment with GI triage.
31. Waited 2 weeks for returned call and got an appointment.
32. Got a phone call from reimbursement and had to fax in the Insurance Company approval.
33. Drove in for the appointment 2.5 hours from home. Arrived to find out they had called to move the appointment an hour up and we were now late. (I was already gone when they moved it up). They saw us during the lunch hour and the Doctor kept using foul language.
34. Doctor says she needs a GI scope and needed pre-surgery physical. GI ordered a swallow study.
35. Took Becca to see her Primary Care Doctor for physical and gave them the order for the swallow study.
36. Doctor made recommendations based on bleeding information from her Hematologist in MI.
37. Doctor arranged the swallow study and we got it done.
38. Scheduling called and said that I needed to go to our In-network Hospital for the treatment via IV for the procedure and then be admitted to the other hospital for the scope. I asked why they couldn't just bill Medicaid for the medications etc. They said that if she had Medicaid only they would have to take the Medicaid reimbursement, but not if we had insurance they wouldn't.
    Coordinating two hospitals for the procedure with 1 hour administration of IV antibiotics and platelet transfusions was not feasible
39. Doctor called up to the GI to give recommendations on why you cannot go back her stomach as her risk of duodenal hematoma because of her platelet defect. The doctor refused to admit her overnight per recommendations.
40. Met with Primary Care for Becca's monthly visit and we fired the Out of Network GI.
41. Asked Becca's Adult Congenital Cardiologist in another major hospital system about who should see her.
42. Took recommendations to her primary care doctor. Put in the referral to the Pediatric GI.
43. Put in the Out of Network Prior Authorization for the Pediatric GI.
44. The insurance company miraculously approved it.
45. Put in a referral for the Hematologist who was recommended by Becca's Cardiologist. Saying that Becca needed a medical home with specialists who were in the same system to coordinate her complexities.
46. Submitted the Hematology Referral.  Prior Authorization for an Out of Network Approval to insurance
47. Pediatric GI would not see her due to her age and scheduled her with an Adult GI.
48. Doctors office put in another Out of Network Prior Authorization for the GI in a different department in the major hospital.
49. Insurance company now denied the Prior Authorization.
50. Called the Insurance Company Case Manager but Becca's worker had retired. Had to fill her in on all the troubles we were having with insurance. Told to resubmit and attach the old approval with a letter and the documents on why she needs this.
51. Prior Authorization was approved.
52. Primary Care Clinic called to say it was approved and they made the appointment.
53. Becca finally saw the Adult GI. He ordered us to come back for an Upper GI.
54. Called the clinic to put in a referral and pull the paperwork for the Out of Network Upper GI.
55. Insurance company denied. But with having the denial, the Out of Network Hospital took the Medicaid payment.
56. Test was done.
57. GI Nurse Practioner called to say they found that Becca has a Paraesophageal Hernia and they need to Scope her. But not until she is given clearance from Cardiology and Hematology with their recommendations for treatment.
58. Resubmitted for the Hematology Prior Authorization at the the GI and Becca's heart doctors hospital. 
59. Insurance company denied the Out of Network Hematology consult. Saying she can see in network people. But the hospitals in their network cannot manage her care.
60. Called the Hematologist who the insurance company wanted her to see. His office told us that he was not wanting to continue as her physician as Becca wanted a female.
61. Asked for an Out of Network Referral to the Recommended by her Cardiologist in the same hospital system as the current GI.
62. Clinic put in a Prior Authorization to the insurance company for the Out of Network Hematologist.
63. Insurance Company Denied.
64. Put in an Out of Network Referral to a Out of Network Hematologist who saw Becca 1 time and never let us go back.
65. Insurance Company Denied.
66. Appealed, Denied until I see every Hematologist in the In Network system. Told to go back to the assigned in network Hematologist who did not feel comfortable seeing her.
67. Made an appointment to the First In-Network Hematologist, who was not comfortable with Becca. Argued with him about Becca's bleeding disorder. He says she has "Normal numbers of Platelets" and nothing should be a problem. I handed him the records from the Out of Network Specialists recommendations and her prior Hematologists. Explained that her Platelets do not work and he told me I was wrong. I asked for him to arrange a second opinion and left in tears while Becca made the appointment.
68. Saw the New In-Network Hematologist who got a stack of Hematology records. She had begun to talk about the First In-Network Hematologists recommendation.  I showed her the Platelet Studies from the UW of Michigan before we moved. She then said she was not sure she could handle our daughter's case but wanted to talk with some of her collegues from her training at the UW (Where Becca went once) about bleeding findings in Noonan Syndrome.
69. Waited 6 weeks and then called back to find out if the Doctor was going to be Becca's doctor or not.
70. Doctor called a week later and said that the colleague wanted more testing.
71. Took Becca for more testing.
72. Got the results from Becca's Primary Care Provider which now adds 3 abnormal clotting factors.
73. Called the Hematologist to see if she wants to see Becca or go over the results and whether she wants to be Becca's Hematologist.
74. Still no returned phone call to Mom.
75. Talked to Primary Care to find out what to do with Hematology at an appointment for Becca.
76. Primary Care Provider called and talked to the Hematologist who says that Becca will need Fresh Frozen Plasma, Clotting Factors, DDAVP, Platelets for the procedure and then Amicar every 4 to 6 hours for several days following.
77. Put in a new Prior Authorization for an Out of Network Referral for GI.
78. Put in a Prior Authorization for the Out of Network Referral with the insurance company.
79. Insurance Company Denied.
80. Put in a new Prior Authorization for the Scope.
81. Put in the Insurance Company Prior Authorization for Out of Network
82. Waiting.
83. Received a call from the Hospital GI lab and said that they were reviewing the Hematology notes and will call when they get it all coordinated.
84. Week later received a call from the Hospital GI lab scheduling saying that they will be following the recommendations of Dr. A......  the GI who was fired.  They had been faxed the new Hematologists name and it is in the Epic medical on line system with her hematological diagnoses.   I explained that we fired the doctor and what I was told. Reading her the notes that Becca's primary care doctor had told me would be necessary.
85. The GI Nurse Practioner called and they tell me that they need me to get the New Out of their network Hematologist to fax up the cover page, the detailed recommendations, the diagnoses and all her chart notes from Hematology. I asked just from the second or the records from our two prior hemologists.  All of it.
86. Then she tells me that they will decide at that time whether they will do the scope because she does not have a hematologist in their network.
87. This Mom has had enough, and cries.
88. Becca's primary care provider a family friend called tonight and I explained.
89. Tomorrow we call Hematologists office to get them to fax in the required paperwork.
90. Then wait.
91. Becca's Dad's clinic was bought out, on 10-1 we get a new insurance company and start all over with who they see, and learn a new process and hopefully it is better than our managed care insurance company.
92.  To Be Continued ?????
93. After 3.5 years of us arguing with Miss Becca to get her to eat despite the pain maybe they will finally get to someone to figure out what to do to help her pain with eating and her esophageal hernia.