No longer a patient, but still have CRPS? (18.08.2016)
I’m in shock. I’ve just been told that I’m no longer an outpatient at the community hospital where I’ve been treated since March; first for a Colles’ fracture (broken arm, near the wrist), and then – once I was finally diagnosed – for Complex Regional Pain Syndrome (CRPS; also often known as Reflex Sympathetic Dystrophy or RSD).
My official ‘treating physician’ at this hospital is the orthopaedic surgeon to whom I was assigned for follow-up, after the fracture. But the physician who’s been treating me for CRPS – the rare disease that was triggered by the fracture – is a neuro-anaesthesiologist at the same hospital.
I had to go back to se the original orthopaedic doctor today, for what I expected would be a regular follow-up appointment. Instead, my now-former treating physician advised me that there was nothing else that this community hospital could offer me as treatment for my rare disease, so they were discharging me.
As of this appointment, I’d no longer be an outpatient at this hospital. And because no physician at the hospital would be following my care (i.e. treating me), my medication plan – which my neuro-anaesthesiologist and I had developed together, after multiple medication failures (including numerous combinations of medications) – would also end. So once I’d finished the medications I had left, from the last prescription from the neuro-anaesthesiologist, I’d have no treatment plan.
The neuro-anaesthesiologist at this hospital couldn’t keep treating me for pain if the original treating physician (who’d referred me to the neuro-anaesthesiologist) discharged me from ambulatory care… That was it for me, as a patient at this hospital.
I live in a suburban area of a large city which has not just one, but two, medical schools and multiple associated hospital centres. The no-longer-treating-me physician didn’t even suggest referring me to a larger hospital, until I somewhat incredulously asked: “What do I do next? How will I keep working, without any treatments?…”
His response was an off-the-cuff: “You know what you have is serious, right?” (I may not have the exact words; this is what I remembered by the time I got home). I was stunned. And thinking to myself: “Yes, I know it’s serious. That’s why I’m so surprised that you’re just releasing me as a patient, with no treatment plan!!!”
After that, I managed to recover enough from his comment to ask about the possibility of a referral to another healthcare centre or hospital. He finally – and somewhat reluctantly, it seemed – gave me a referral to a pain clinic at a much larger hospital. But now I’ll have to deal with another hospital – by myself – and I have no idea how long it will take to be seen there.
So the next little while should be very interesting, once I’ve finished my current prescriptions. To understand the level of pain I’m living with, I’d been vomiting from pain every few hours – always interesting when your workplace is carpeted!!! I really don’t want to go back to that again…
Somehow this just doesn’t seem right. Why couldn’t the orthopaedic surgeon, at my local hospital, keep me as a follow-up patient until my rare disease case was taken on by the other hospital? He couldn’t, or wouldn’t, even answer that question. Like much of my experience with this particular doctor (read Google this, a diagnosis for an example), his attitude and approach seemed to be dismissive and flippant – bordering on disrespectful.