So frustrating getting help and Advice from PD nurses


#1

My wife was diagnosed about 12 years ago and up until recently the medication originally prescribed worked and she led a pretty normal life. The last 18 months things have deteriorated slightly with a need for medication changes but trying to get hold of a PD nurse is no mean task in itself.
Leave an answer phone message and the lottery of getting a reply begins! Call me selfish but I want help for my wife now, not in up to 5 days time!
Our designated nurse only works Weds/third and Friday. I find myself leaving abrupt messages to gain a quicker response. If only an MP would one day canvass on our front door he/she would get both barrels on the chronic underfunding of the NHS, believe me!
Any contact with the GP involves them just referring us back to Neurology or ME explaining to THEM what the particular medication is for!!
I hate criticising the NHS especially those on the front line but we all want the best for our loved ones.
Anyway, today we start the lottery of contacting the PD nurses again.
Wish us luck.


#2

Hello,

You must be really frustrated trying to get some advice and support, Try the helpline you may get some success there.0808 800 0303
Good luck and hope you get your wife’s medication sorted out soon.
Helen


#3

Thanks BethanKit,
Parkinson’s UK have been brilliant when we have called them. Great advice on many topics and without them we would be lost.
Just these medication adjustments need PD nurse approval and prescription.
We will get there but it is so frustrating!

Regards


#4

welcome to our world my husband has every pd symptom known we have . well did have an uncontactable pd nurse who has now apparently gone sick, messages never responded to doctors shrug and say we tend to leave pd problems to the professionals! medications have in the main been unhelpful, now john has memory probs, anxiety attacks, panic attacks, bouts of heartbreaking crying all his bloods urine heart tests come back negative for issues, thank goodness for parkinsons uk they are a veritable lifesaver with their prompt answering to queries and ability to listen, christine


#5

Christine1948.
That is shocking. When a PD nurse does call back it is though you are a hindrance in asking questions but on a very rare face to face appointment they are all sweetness! I am considering going down the complaints procedure via our local health authorities PALS system. It has worked before but why do you have to shout to get anything done? The NHS is marvellous but is drained by non medical hangers on and governments that are only interested in statistics and not the real facts.
I believe the NHS rely too heavily on Parkinson’s UK and the like but God without them we would all be stuffed!!


#6

Part time and never respond to messages left.

Has anyone seen the advertisements for Parkinsons specialist nurses and the salaries that they receive??


#7

I have been unable to contact the PD nurse for my area. To avoid the 5 month wait for a neurology appointment, I see a private neurologist at my nearest Nuffield hospital. This is more inconvenient than expensive: he charges ÂŁ160 a visit, which is affordable a couple of times a year, but the Nuffield hospital is a 90 minute drive.

I have had physiotherapy on the NHS, and of course I get my drugs for free, but I pay for chiropody (without which I cannot walk).

My experience of seeking diagnosis of and treatment for PD on the NHS is almost identical to my father’s 25 years ago. National Health Service? I think it would be a good idea.


#8

agree completely, or pd nurse now on extended sick leave. in effect this has no impact on our situation as she was no help at all this just not my opinion but of anyone who had crossed her path. don,t want sympathy, just practical advise and positivity. we know there,s no cure but to be told to shut up because i.m anwering for amy husband who cannot either speak or remember what is happening is neither an example of empathy nor professionalism, ater all all appointment letters ask you to bring along someone who may be able to fill in the gaps.


#9

We did contact Parkinson’s UK and a nurse called us back within 1/2 an hour! Marvellous and the nurse was so helpful with advice. A real dedicated professional who I assume gives up some of her time to help those that need that help.
Thankyou Parkinson’s UK.