Neuro / PD Nurse appointments

[Jacstar3]

Question to pwd in the UK. How often do you see your Neuro & PD nurse.

I was diagnosed in December 2016. I have seen the neuro three times, last time March 2017. PD nurse once in May 2017.

Thanks

Jac

[Seamus6]

Hi you should see your neuro every six months, the reality for me is closer to seven or eight.

Personally I find the whole process 'going through the motions'

The Parkinson nurse should be available to you as required but I've found them to be overworked.

Push them for help if you need it.

[Jeansm]

I was diagnosed privately in Oct 2015, had a 2nd private appointment 6 months later then transferred to NHS. I have seen the NHS neuro 3 times in 27 months & my next appointment is in November. So on average about every 9 months, assuming the next appointment is not changed. I saw the PD nurse once after initial diagnosis but her visit seemed pointless. I telephoned for help once and didn’t receive it on time. After discussing with NHS neuro he gave me his secretary’s direct phone line. I haven’t had to use it yet. I also saw the Occupational Therapist once. She was very helpful.

[alaynedellow]

I was dx in Nov 2015 and have nhs neuro twice, he asks to see me yearly but in my opinion he is a waste of my time. Just says I should take siminet and not really into asking after me. I did see neuro privately and obviously he was helpful but he left to work abroad. Having worked in care industry i always found parkinsons nurses much more informative but mine left nhs! Neuro asked me to look new one up!! I think nhs thinks you donr decline much so dont need help yet!! Sorry not much help but it my experience. This forum is v v helpful and lots info here. Research and become knowledgable to help yourself because you the only one who reaaly cares.

[Jacstar3]

Thanks so much for your replies. I feel so much better now lol. I will stick with my routine of Mucuna and B1, and exercise 😘

[Johnboy46]

I was diagnosed in April 2017, I have had two reviews since, one in early November '17 (7 months) and one next week,31st August,(nearly ten months). So what should have been three reviews in 18 months is only two.

[BJB61]

I was diagnosed in 2016 and have seen neuro three times. Only meds have been prescribed, questions about exercise were answered with take a long walk... no PD nurse or physio referral made. A nurse did see me after initial diagnoses but only to ask if I'd like to donate my brain when I die! I hate going. The consultant is clinical... the other drs on his team much nicer but the general focus seems to be research rather than patient welfare.

[jeeves19]

I concur pretty much with all of the above: it’s all quite exciting to begin in a funny kind of way and then it deteriorates into somewhat futile and unproductive sessions. And when you DO need them, they don’t respond. Especially the neuros secretaries who seem to receive special training in being obstructive 😢

[Dap1948]

We don't have a PD nurse in our area. I see my neurologist every 18 months.

[jeffmayer]

Every 6 months at the moment

[Jacstar3]

I am mortified about the lack of care and consideration to us. I contacted the PD nurse yesterday, only to be told someone will get back to you. I am still waiting 24+ hours later. When I did see the neuro back in March 2017 he really was not interested in me once I told him I was taking Mucuna. The appointment lasted all of 10 minutes. So while I can manage on my own with backup from all the wonderful and very helpful people on HU, I will get on with life. My concern is for the future, God help us all.

Thank you to everyone who has replied to my question, I really appreciate your time.

Here's to a positive future.

[gingerj]

I was diagnosed in June 2016. Have had 2 neurologist appointments and have still not heard from my of nurse. Told she covers whole north west and is busy. 🤔