Im in Australia in the public health system. one certainly needs to be forward with the medical types as we can have such motivation to learn about PD, because of whats at stake, that we often know more than they do, but the do control the prescriptions. Im always polite but jump right in and get involved. The better Docs like that. It helps that I was an emergency dept RN for years.
I don't think I would consider seeing a Neurologist privately. I'm happy that my NHS Neuro specialises in PD and has the experience of seeing many pwp in my health area. As her patient I have access to a PD nurse for any urgent advice (or daily living advice), a Neuro Physio and Neuro OT.
I agree that you need to speak up at appointments - doctors are not mind-readers!
I'm in the uk and I saw my nhs neuro today - currently I see him once a year and have access to a Parkinson's nurse. He spent time with me, answered all my questions, and I find him to be excellent. PD is his special interest and he's very knowledgeable. I have however put aside some cash in case something happens - a new, experimental drug, say - where it might be helpful to see someone privately. I've also paid to see a physio privately, one specialising in our condition, and it was well worth it. I'm not sure what benefit seeing a neurologist privately woukd afford you, as most NHS neuors also have private practices so you'd end up seeing someone you could see for free on the NHS! If you aren't happy with your current neuro, I'd research who is available in your area and ask your gp to refer you to them. I guess the other benefit is time - NHS clinics are crowded and time is pressurised.
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