In June I changed hospitals, as I had lost trust and confidence in my previous hospital. I was very impressed with my new neurologist and the amount of time and care he took, finding out my history with Parkinson's. That was in June. Well today, I met my new PD nurse, who was a charming middle aged man, who actually listened and took an interest in what I was telling him, without once referring to his computer! (Unlike my previous PD nurse). He obviously jotted down relevant notes on a piece of paper, but what a joy it was, to talk to someone face to face, without them tapping away on a keyboard and not even looking at me! I know computers have their place and we couldn't manage without them in this day and age, but there are certain times when just having eye contact with someone can make all the difference. A caring attitude means so much, when you have an illness. I'm so pleased I took the decision to change hospitals. (And very happy that my GP was willing to back me up and refer me).
If anyone else is dissatisfied with their treatment, I urge you to do the same. We deserve the best care we can get.
Twinks I appuald your bravery most pwp seem to just accept it that some hospitals are poor in the way they treat their patients. I would not tollerate this as you know and I am pleased you made this decision. I can only assume those who put up with shoddy care think it may be to stressful to ask for change but hope your post will convince others to put their foot down and vote with their feet at the end of the day we have all paid for our NHS and we all should demand we get the best possible care available.
That's Great, except some neuro's appear to serve several hospital's, so you might move hospitals except you'd still be queing too see the same neuro.
A chap came to a PD group meeting last night with his wife, his wife was protesting that he had been left behind , he hadn't seen a neuro in 3 yr's , he had seen the nurse, expect she has now retired, and new one has been appointed, but the normal flow of appointments seem to have been broken, so said many, infact many wondered when they'd actually see a Neuro and who it might actually be.
The wife thought in her estimation the those who push hardest for appointments were to the detriment of those who just humbly wait for one.
I suggested a letter could be pen'd by a rep of Parkinsons uk who was present and we could all sign it. she suggested i write it myself.
the chap & wife left the meeting no further forward.
Hi sea angler,
Thank you very much for flagging up this situation. It's really sad that some people affected by Parkinson's can go for so long without seeing their neurologist. I have passed this on to the team so they can look into whether something can be done or at least to make them aware of these failings in the system.
I'm new to the forum but I am so convinced that a good PD nurse is vital to our mental health as well as physical. I'm glad you had the chance to change yours. Mine takes time with me and I could be there for an hour or so. She's my link to the consultant and will call into his room while I'm there to ask questions. It means alot. It's good that you highlighted this change for others.
Thanks for your reply DivineR. I'm so pleased to hear that you have a good PD nurse and consultant. Not everyone on here is so fortunate. It costs nothing to be polite and have a friendly smile when seeing patients, whatever illness they have. Having confidence and trust in our health care professionals, is vital.
I wish you well and welcome to the forum.
It's taken a while for me to post as some information is very overwhelming. But as you say I know I'm lucky to have the backup and appreciate it.