Hi Wilson,
My husband was treated at OKC VA in their ALS clinic. Our experience with the ALS clinic was mixed. We had some experience with the Dallas VAMC ALS clinic, and were surprised that they weren’t all the same. When we had an appointment at the Dallas clinic, it was a Team approach to care. We stayed in a single exam room and everyone came there. Even clinicians came to that room, so once we got to that room, we stayed until the appointment was done. The equipment for breath volume testing, arterial blood gas draws, they brought it all to him. We met with the Neurologist, usually first, and then everyone else on his team would rotate thru. His Care Coordinator stayed with us for the entire appointment and took notes. At the end, the entire team would come back together and recap everything they had determined during that visit. Test results were shared if they were ready. The Care Coordinator would have tracked down any new equipment/devices/meds we had been prescribed and would have them ready for us to take home that day. If it was something that had to be ordered for later delivery, she handled it. If any of the Team needed to communicate with us between appointments, that Care Coordinator was a single point of contact who faciltated that. In between visits if we had a problem, that’s who we called. At the end of each visit we were also given a written recap of all the information we had received that day, and we were provided a laminated call sheet with the name, function, phone number and email of every person on the team. We saw his neurologist, respiratory therapist, Physical Therpist, Dietician, Social Worker, etc, at every appointment. It was a finely tuned machine.
When we transferred to the OKC ALS clinic we expected it would be the same. It was not. On our 1st visit, we met the entire team, including the neurologist assigned to us ( who we never spoke to again) There was no Care Coordinator but there was a PA who seemed to be filling that same role. She was our main point of contact, for everything. Neuro, medication, home health, appointments. They said it was a Team Practice but experience didn’t bear that out. Once everyone introduced themselves they told us what tests they needed that day and told us how to get to our first appointment, to get blood drawn. We schlepped up and down the hallways for almost 5 hours. We didn’t have time to eat. We had to ask for a urinal and a private spot to use it. We had to go to prosthetics to pick up his equipment and figure out how to carry it for the rest of the day.
At the end of our first visit we were encouraged to stop and meet with the PVA rep, and she is absolutely the best thing they have going for them. When we left her office I had her card, her cell phone, and even her fax number. I think at one point she gave me her parents home phone number because she was going to their place for the weekend. Her name is Regina Presley and she is an absolute treasure.
We were a little discouraged after that first visit but hoped it would get better. It never did. The PA was wearing many hats, and stretched far too thin. And the prosthetics department at that VA is like a black hole. Every single thing was a fight.
If we had never seen how the Dallas ALS Team functioned, we wouldn’t have known any better. But we did. So it was infuriating and exhausting. I was emailing OKC about something one time and quoted the ALS System of Care Handbook. They said it didn’t work like that everywhere. I said but you’re an ALS Clinic, and they replied yes but not all ALS Clinics are the same. They told me they didn’t have the budget that the Dallas clinic did so they couldn’t operate the same.
My experience with them is almost 2 years out of date. It’s possible they’ve improved during that time. Regina could tell you. I’d recommend you call her and ask before you commit. Her office number is 405-456-5483
Addendum: I’ve been erasing and rewriting this for a couple of hours now. I don’t want to suggest that the individual team members were ineffective because they were not. The ones that we dealt with individually were caring and professional. The respiratory therapist was excellent. The woman who managed the wheelchairs, she knew her stuff. She was a wizard with a wrench. But the Team leader either lacked authority or budget, or support. Or perhaps she was over-extended. Something was keeping them from being effective supportive advocates for his medical needs.
I don’t think I’ve posted enough to be able to PM. If you want to talk to me about this that would be fine.
