How often do you see a Parkinson’s specialist

About Parkinson's and health Treatments and therapies
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My husband was moved to another Parkinson’s hospital before COVID. He seen the consultant twice. In came COVID and did not see the Parkinson’s nurse for around 2 years. He was in a lot of pain and I contacted the department. They said for some reason he has been missed of the list. He then seen the Parkinson’s nurse around 3 times, but has not seen a Parkinson’s nurse in about a year and the Parkinson’s consultant since COVID started

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Hello Katty … I see a Parkinson’s nurse every 6 months. My Neurologist left the NHS a good while ago & the only one I’ve seen since was seen privately.

I am 71 & was diagnosed in June 2023.

Best wishes
Steve2

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Hello Katty

I was told I would see a doctor {general not specialist}every six months but have just gone over 16 months since I was last seen. I keep on getting letters of postponement and a new appointment but no reason why I am being shunted along. Any time I need to discuss anything I phone the PN, but she is overstretched and doing the best she can with an increasing workload. I have resigned myself to not getting the help I need.

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It seems to depend on where you live. Luckily i see my consultsnt every 6 months rain ir shine

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Hi Katty
my husband has had Parkinson’s for 18yrs he sees his Parkinson’s consultant every 6mths cant remember last time he see a Parkinson’s nurse hope you get the help you need

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Hi i see my consultant every 6 months and she is fantastic so lovely to talk to

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xx

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Hi there, My HWP was diagnosed 10 years ago but he was misdiagnosed by our GP for 4 years before his “official” diagnosis.We only got an appointment after the 4 years because I demanded at a GP appointment ( in a nice way) that he was referred to a neurologist as it was obvious that he had PD…. (This was confirmed at his diagnosis appointment with the consultant that he had been misdiagnosed for 4 years ). In the last 10 years he has only seen a PD nurse 4/5 times and a consultant about 5 times. So not the 6 month PD nurse/ 6 month consultant appointments we were originally told…He actually went over 3 years at one point without seeing anyone. It was only because I complained and he was eventually given an appointment…The PD nurse and our GP are always copied into the letter after we have seen the consultant but sadly the PD nurse never gets in touch to book an appointment,even though the consultant asks in the letter for her to see my HWP…consultant appointments are never yearly,they are very hit and miss…..so sadly to say we have lost all faith in getting any regular support from anyone…sad times…..

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The average wait time for 1st appointment in North Essex is 60 weeks further appointments are around the 54 week mark, no Parkinson nurse appointments are available, GP will just refer you to the hospital so it either this site or nothing

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Hi @Babesbrown, it sounds like you and your husband have been on a long and exhausting journey. Please know that we are here for you, and that support is available.

You can call us for free and speak to our specialists, who can provide information and advice about living with Parkinson’s: 0808 800 0303. Our helpline is open Monday to Friday from 9am to 6pm, and Saturday from 10am to 1pm.

Please do reach out if there is anything we can do :blue_heart:

Parkinson’s UK Moderation Team