Hi,
I’ve done something to my settings so I’m not getting notifications from the forum anymore hence the delay in responding.
Thank you both so much for this information, it’s really useful and I will take advice and start working on getting a video or face-to-face appointment - I suspect it is going to take me some time so good to start early I think.
Thanks again, really useful advice. Jx
As a by the by Jackson, the NICE guidelines for Parkinson’s states this
'Review of diagnosis
1.2.5 Review the diagnosis of Parkinson’s disease regularly, and reconsider it if
atypical clinical features develop. (People diagnosed with Parkinson’s disease
should be seen at regular intervals of 6 to 12 months to review their diagnosis.)
2006.
Compared to many, I seem to be very fortunate. Apart from the old blip when for one reason or another appointments have got a bit muddled I have had face to face reviews - except for changes forced by covid when I had telephone reviews - every six months alternating between my consultant and the specialist nurse. In addition I am able to contact either between appointments if needed and it has been so since diagnosis. My experience should be the norm, not the exception which posts to this forum appear to suggest.
Hi Tot,
It’s definitely worth referring back to the NICE guidelines but the trouble is that there doesn’t seem to be any appetite for following them. It increasingly feels as though there is an acceptance that with Healthcare resources being stretched, the need for cost effective ‘support’ is the driving force because there is a lot of talk about digitalisation and self care and GP support.
I used to have the access to the support that you have but nursing services in this area seem to be seriously depleted and I think there is pressure from the CCG to discharge anybody who is not a new referral or is not in crisis.
My PD nurse was my lifeline when I ran into trouble with medication between neurology appointments but now I think I have to discuss my medication with a GP who know’s nothing about Parkinson’s and whom I can’t get to see anyway; but at least I’m still on a neurologist’s caseload at the moment and have appointments even if they are by telephone so I am better off than many.
Call me cynical but I suspect that my future support will largely consist of my GP, a digital device that I can’t use 'cos my hands shake too much (and I live on my own) and lots of referrals to online resources and help sheets.
Well that’s progress for you I guess 
.
Jx
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