We don't have a PD nurse in our area (lack of funds?) and GP says we should see her in the first instance if symptoms increase. Is this normal practice or do others go to their neurologist first. If so how long in your experiences do you have to wait for appointments. It's bad enough getting an appointment with a GP
Morning Davech.. good to meet you ( altho' it's me that is the PD person... so much of what you're saying is a parallel for me)...
Re. GPs/Consultants/Specialist Nurses... I live in Folkestone and the "set up" here is (i) referral by GP to Consultant (I actually paid for first time with Consultant - altho' not insured - as was so desperate to find out what was wrong and get 'stuck in' to doing something about it)... he was brilliant and took me on as NHS patient after that.. (ii) see him every 6 months and (iii) see Spec. Nurse in intervening six months (mind you, had to sort getting on Nurses books myself - similarly affected friend told me about service... So, effectively you see someone every three months (which to me, inveterate worrier, is long enough!)... but you can phone or e-mail Spec Nurse if you "panic" in between visits (that's me!!) and she gets back to you within 24/48 hours.. Bit like the service provided by P/son's UK (I've used that, too, and they're really good, too)..
Do feel for you - as I said readily understand and can empathise with your
thoughts and worries (been there, done that - still go there!!).. but there you are, we both know now we're not alone.. Takes a while to get your head round but keep "chatting"/visiting here and you'll find a lot of info, support and care..
'till next time... bursardavid