Nicole is on Medicaid through SSI. Tthe plan she has is Children’s Medical Services (CMS) which is specifically for chronically ill children up to their 21st birthday. The criteria for a primary care physician is that it must be a pediatrician and they must take CMS and see a child up to 21 years old.
CMS gave us the name of a doctor which was a 1/2 mile from our house. We didn’t see the doctor they recommended but another doctor at the practice. This female doctor “didn’t know there was such a thing as pulmonary arterial hypertension”. When I inquired about seeing the other doctor I was told that the decision which doctor a patient saw was made in the back office. Needless to say, we didn’t go back.
Her CHD cardiologist at the time referred us to a doctor who specialized in neonatal babies but agreed to see Nicole. This doctor, along with three others, go to the CMS clinic on Wednesdays to see patients. If there is overflow than they will schedule on Thursdays also. The doctors are great and Nicole and I both like them but it is a clinic setting and Nicole doesn’t like that. She thinks it is more “germy” there. Another downside is that this is 20 miles each way from our house and in Orlando traffic this could take anywhere from 30 -45 minutes. Another issue is what happens if Nicole gets sick and she has to see a doctor for a sick visit. We were told to take her to a chain of clinics that are after hours and opened from like 2:00 p.m. to 11:00 p.m. or something like that. I am not comfortable with this as Nicole has very serious health issues that some doctors don’t know anything about.
The intern social worker at Nicole’s PH specialist office called around and found this doctor which is super close–just under five miles which still takes about 15 minutes. I had set up a couple of appointments but had to reschedule twice; the first time because I had overbooked her and the second time because Medicaid wouldn’t approve the visit because she already has a PCP. Duh, I told the lady this when I scheduled the appointment. They didn’t tell me this until the day before the appointment. I said I would self pay which was $100 but didn’t have that at the time.
Thursday was the day of the appointment. Nicole had to change her site on Tuesday so she had to use her wheelchair because of pain. We got there and pulled into a handicap spot right by the door. Hauled everything out of the car…. wheelchair…. bag on wheels (which I was hooking on the handle) and the portable O2 concentrator hooked on the other handle. Get to the door and there is no automatic doors or a button to push to get the doors open.
I struggled to open the door and get Nicole pushed through one of the doors without damaging Nicole, myself or the stuff on the wheelchair handles. A young lady who had a two-month-old baby in her lap sat there and made no effort to even get up and open the other side of the door. I finally get Nicole in the doors and find out that the office is right around the corner.
Nicole’s appointment was for 8:45 a.m. and we get there at 8:40 a.m. and the office door is locked. We go back to the lobby. I asked the lady with the baby if she was there for an appointment with this doctor and she said “yes” and her appointment was 7:45 a.m. I had Nicole google the doctor’s office to see what the office hours were and they are 9:00 – 5:00. So my first question is, Why are you scheduling a 8:45 a.m. appointment when you don’t open until 9:00 a.m.? I had just assumed they opened at 8:00 a.m. This is something I will make sure I know in the future.
About 9:00 a.m. someone from the office comes out and gets us and implies that they had been waiting for us. A few minutes after we get in, another couple with a child come in for an appointment and signed in and within five minutes was called back. The nurse/receptionist says to me, We are running through the insurance and I said I am self – paying. Something I had told them at least two times.
The lady with the baby is called back and then a few minutes later we are called back. Nicole had to get out of the wheelchair to get weighed and she hasn’t used her wheelchair in awhile so I forgot that the chair would be top heavy. With the bag and concentrator on the handle the wheelchair and Nicole not in it, the chair could fall backwards which is exactly what it did. The doctor came running over to make sure Nicole wasn’t hurt. She wasn’t in the chair. The whole reason it fell backwards but I was embarrassed.
The doctor finally came in about 10:00 a.m. She said “are you sure I have never seen Nicole before at the after-hour clinic” and I said “no”. Nicole is talked about a lot amongst doctors because of her unique health issues so her name could have been familiar because of this. She was extremely nice and very good. She listened to what we said etc. She said she would be happy to see Nicole but we would have to switch PCP’s in order for Medicaid to cover it. I didn’t think until afterward–I wonder if the doctor would see her (if I pay out of pocket) only if she’s sick. She did suggest I set up an appointment for October for Nicole to get her flu shot.
On the way out I schedule the appointment and left. I walk around the corner and am halfway through the lobby when about four people walk in. Do you think anyone of those people stopped and held the door for me? NO. In my mind there is no excuse for this total lack of consideration for somebody else. Unfortunately, if you haven’t experienced trying to open a door and push a person in a wheelchair through the door you don’t know how difficult this is. I thought the ADA required all buildings to have automatic doors that make it handicap accessible for people. I’m not sure how someone who was in a scooter or motorized wheelchair would have been able to do it themselves.
As I am writing this I just realized that my father-in-law could have gotten out of the car also and opened the door for me and he didn’t either. Nicole has to decide whether or not she wants to see this doctor in place of the clinic. She goes back to the clinic on the 6th to get the results (which we already know) of some blood work the doctor ordered. I do need the doctor to fill out paperwork so I can renew Nicole’s handicap placard.
We’ll see what she has to say. It is hard. As Nicole’s PH specialist is awesome, wonderful, love him but his office staff isn’t the most efficient. It takes forever to get anything done, including filling RX’s etc.
I have been waiting since June for the nurse to call in a prescription to the specialty pharmacy for a pain patch that the doctor prescribed. The pharmacy won’t take the prescription from me. I haven’t gotten another referral for a hematologist either. The doctor we saw on Thursday said she really needs to be seen and followed by one because of her blood disorder. She gave me a referral for CMS to find one that takes Medicaid.
It seems if the doctor is good their office staff doesn’t get stuff done. If the doctor is crappy the office staff is nice. What is more important? A good doctor or good office staff?
- Transplant Appointment (caregiving.com)
- Update on Nicole (caregiving.com)
- Balance… (caregiving.com)
- Follow up to Gainesville… (caregiving.com)
- Nicole’s Make-a-Wish trip (caregiving.com)
- Check Up! (caregiving.com)
- The Good Phight: My Daughter’s Story, the path to diagnosis, treatments and acceptance (caregiving.com)
- Another Decision (caregiving.com)
- Frazzled…. (caregiving.com)
- “Not Being Sick Enough” (caregiving.com)