Parkinsons nurse?

Hi.its 2 years and 4 months since my husband last saw a PD nurse. He has not even had a telephone call from her?
Just wondering if this is the normal now for everyone?

Hi @Babesbrown, :wave:t4:

I’m sure you’ll hear back from other members with their own experience, but I wanted to offer some support in the meantime.

I’m so sorry to hear that your husband hasn’t been seen by a Parkinson’s nurse for such a long period of time. Some Parkinson’s nurses are being asked to move to different roles because of coronavirus. During this time, our helpline advisers, including specialist Parkinson’s nurses, can provide information and advice on all aspects of living with Parkinson’s.

Call 0808 800 0303 to get in touch or find out more about our information and support during this challenging time.

I hope you find this information useful.

Best wishes,

Hi @Babesbrown

I didn’t see my PD nurse for about 18 months whilst COVID was doing its worst but I had an appointment in the autumn and am now back on a six monthly schedule

So you should probably chase up your neurology department.


Hi I’m new to the Forum. I’ve bee living with a Parkinson’s for just over 12yrs. The medical attention from my Parkinson’s Nurse and Consultant up until 2 yrs ago was good. Appointments Were every 3 months . But I really do feel that I. Have been put to one side and left to cope on my own as far as they Are concerned. What happened to my regular blood pressure & heart monitor checks, which I was told were essential because of the medication prescribed. I know my Parkinson’s Nurse was redeployed so hopefully I will see her soon . Bit my consultant has never contacted me in over 2 yrs. But it’s not all negative I’m fortunate enough to have valuable support from The Institute for Conductive Education. Who are movement specialists. Without them and their online therapy once a week my mobility would be so much worth. The Conductor has been my lifeline. She has a particular interest in Parkinson’s and her knowledge of the subject is relevant and up to date. So this is my thank you to them. And if anyone is interested in hearing more contact them. NICE National Institute for Conductive Education . Thanks for being there. Liz