r/disability • u/Original-Cranberry-5 • 1d ago
Has anybody with cerebral palsy been denied care from a neurologist?
My primary doc said no hospital in my area is accepting referrals for patients with CP. This is really bizarre and my doctor is trying to find a solution.
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u/OscarAndDelilah 1d ago
I have a couple friends who go to the local children's hospital for CP care. Several departments there specifically will see people lifelong who have congenital conditions, because adult docs aren't as familiar with these and peds see them all the time. Board certification in most pediatric specialties covers treating the whole range up to teen-21s who are adults from a biological standpoint, so ped specialists are qualified to see adults but not vice-versa. See if your local one does this as well?
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u/mekat 1d ago
I got caught in the vicious cycle when my son in toddlerhood. His genetic syndrome and coexisting medical diagnoses made it extremely likely he had a tethered spinal cord. Because it wasn't found during the NICU MRIs, and he wasn't having active seizures, I couldn't get anyone to give us the time of day. He needed a diagnosis from a neurologist before a neurosurgeon would even take his case. My son's EI therapist finally recommended a neurologist, and that was how we found one willing to give us the time of day.
My first stop would be a UCP if you have one locally because the neurologist we were able to find that was willing to work with us had a working relationship with the organization. I would look at the neurologists interests if you can find that published in your insurance provider booklet or the hospital website, see if someone has a special interest in CP.
You may need to see the local PCP who coordinates care for those with disabilities in adulthood. This is how my son gets 100% of his adult referrals. These PCPs can be hard to get into, much harder than the average specialist. I waited a year to get my son into a PCP who specialized in complex medical care management in the adult system. The other possibility is adult vocational rehab in your state may know.
Seriously, my son's PCP opens up doors. My son got treated totally different at the ER as soon as they knew he went to the complex care clinic because his doctor is known to be an active advocate in the local community. Maybe you don't need that type of help, but my son is the type of patient most doctor's dread and very few doctors have the expertise to handle, so I need all the professional leverage I can to get him in somewhere and keep him there.
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u/Ok-Sleep3130 1d ago
I don't have CP, but I often see CP and MS on the list with EDS when I am looking at the list of things doctors near me refuse to treat. I have also been denied from neurology, and rheumatology, OB/GYN etc. They seem to be worried about patient abandonment once you're in, but before that they seem to try and screen out as much as possible even if there's nowhere else in state.
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u/Original-Cranberry-5 1d ago
That is wild- I haven't ever encountered that before and I have seen a couple of specialists when I was younger.
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u/Shoddy-Conflict-338 1d ago
I can't even get a companion bus pass and I have a different type of CP
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u/SorryHunTryAgain 1d ago
I doubt this is specifically because you have CP. This is because the neurologists who specialize in conditions like CP in your area are not accepting ANY new patients.
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u/Original-Cranberry-5 1d ago
My doctor said those words verbatim. That it had to do with my CP Thanks for chiming in though. If she hadn't specifically said this, I wouldn't have posted.
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u/FunnyTraditional2989 1d ago
Unfortunately, doctors can only see so many people and many will stop accepting patients or patients with certain complex needs when they’re overwhelmed. The places that never stop accepting patients usually give really crap care.
Depending on your area and needs, there are only so many specialists. I have to travel 1-2 hours to get quality specialists from where I live and that’s without a major neurological condition like CP.
It’s frustrating and unfair, but it only it seems to be getting worse.