I'm the caregiver for an adult with high-functioning cerebral palsy--a retired computer programmer…read morewho is intelligent, communicative, and uses a powered wheelchair. Earlier this year, he began experiencing knee pain and instability, leading to a fall and a hospital stay in January. X-rays were taken, and following rehab, we began care with Dr. Roberts' office.
Initial treatment included cortisone shots, but by April, the pain and lack of stability worsened. A physician's assistant in the office provided a brace, which was ineffective. When we requested a follow-up, Dr. Roberts was too booked to see us in a timely manner, so we were referred to KU for evaluation. KU confirmed, after they ran X-Rays, that the knee was not properly aligned but had even longer surgical wait times. Based on a positive prior experience with Dr. Roberts (who performed a successful surgery for a family member), we opted to stay with him, hoping for faster care.
In preparation for surgery, I moved the patient into senior living where he could receive physical therapy and home health assistance. We completed all required pre-op steps, including medical clearance, pre-surgical classes, and medication prep. Surgery was scheduled for June 11.
On the day of surgery, Dr. Roberts felt the knee and expressed concern about a possible torn patellar tendon. He ordered an MRI and admitted the patient overnight. That was the last time the patient saw or heard directly from Dr. Roberts.
The next morning, a physician's assistant visited the hospital room, and asked us if tests had been run. I was discouraged at this question thinking, "Your office ordered the tests, you should know that and you should be coming to see us to explain the results not to ask if the tests even happened." He said the doctor would be in touch later and that the patient would be staying overnight again at the hospital. However, within the hour, we were notified that there was no tendon tear, and the patient was being discharged. The sudden decision left us scrambling to arrange specialized wheelchair transport (another expense) with little notice.
Unfortunately, the patient was left with no plan of care and no follow-up communication from the doctor's office. I called the office immediately and didn't receive a response until late the following day--nearly 36 hours later. We were offered an appointment with a PA or to see Dr. Roberts a month later. I messaged through the patient portal with several questions: What did the MRI actually show? Is physical therapy still safe? Is this a complex case requiring a different specialist? Could we get a Zoom call or any direct communication with Dr. Roberts? It took another full week to receive any answers, and the response was minimal--only confirming there was no tendon tear.
At that point, I began seeking a second opinion. Another orthopedic team was willing to evaluate the case that same week--if they could get the medical records. Despite multiple requests from myself and the new office, it took four days to get the records transferred. The new doctor is now seeing the patient on July 1--still earlier than Dr. Roberts' next available appointment. They've already scheduled additional imaging to fully understand the situation before the first visit.
In hindsight, I believe the biggest issue was that the pre-surgical evaluation was incomplete. For a patient with a complex condition and non-standard mobility, more detailed imaging and planning should have happened before surgery was scheduled--not the morning of. While we acknowledge that not all cases are simple, the lack of timely communication after surgery was canceled--and the absence of a plan for next steps--caused unnecessary confusion, costs, stress, and delays in care.
We had high hopes based on a previous successful surgery by Dr. Roberts on a different family member. However, this experience has been deeply disappointing. If a case is outside of a physician's scope of expertise, the patient deserves to know that up front, not after significant preparation and disruption to their life. We spent a great deal of time and money and are now back at square one with a new physician.
