I was just diagnosed last month. My consultant filled in forms and said he would refer me to a physio and to a Parkinsons nurse.
I then received a letter asking me to attend at my local hospital this morning. It didnt tell me what for. I only knew it was not to see my consultant as he doesnt work today at the hospital. I think it was most likely the Parkinsons nurse as I think the physio referral was more local to me.
I went for 9.30. I sat there. I waited a hour. I then said look I have been waiting an hour -I need to make a call. They said fine you will be seen soon.
I explained that I help today at a special needs lunchtime club and had to leave at a certain time to make that.
I then asked again 20 munutes later. I would be seen within 5 minutes they said.
Finally I went and said to them that I couldnt stay. They said ok we will make you another appointment. I said no I didnt want one. I wasnt happy with how I had been treated. I did not want to come back and wait again for 1.5 hours and be treated like this.
I said I would wait till my next consultant appointment, talk to him and ask to be referred to another nurse.
I did see reference here to someone saying the Morden Parkinsons nurse was helpful.
I know I may be sensitive being newly diagnosed but I do think
1) It is unacceptable to keep someone waiting 1.5 hours with no explanation etc
2) Especially bad when a newly diagnosed PWP (with noone with me - single parent)
3) Bad when it is supposed to be the start of an important relationship of trust with a Parkinsons nurse.
I really dont think I will be comfortable working with someone who knew I was newly diagnosed yet behaved like this
I would welcome advice to whether I have been too sensitive. Also would I be allowed to self refer to a Parkinsons nurse.
I really have no information - I know noone with Parkinsons and have noone to ask. I thought it would be an important meeting for me today to get all this kind of information
Thanks for reading and getting this far
What a rotten way to start! As a fellow south londoner I know what an effort the journey can sometimes be. Did they give you no reason for such a long wait?
I see a PD nurse at a large hospital near London Bridge. I have always found the department efficient, punctual and helpful. I hope you can get a transfer to somewhere that suits you.
I am so sorry to hear you have been treated so badly. I have had Pd for a while now and the appointments to see my Parkinsons nurse are usually on headed notepaper or have a line which says you have an appointment with PDNS at whatever time.
Try not to let this incidence affect you too much. If you get another letter to go for an appointment and it doesn't say who with then I suggest you ring the appointments desk and clarify appointment details. As you need to know if you are seeing Physio= comfy clothing, PDNS or consultant normal day wear.
the Parkinson's UK helpline is useful 0808 800 0303.
I believe a peer support network has been set up again helpline will explain all.
My last appointment to see my consultant, It was nearly 2 hrs over When I asked if I had been missed, was told the clinic was running 35 mins late, I'm still trying to work that one out.
The Parkinsons helpline gave me the number of a local support worker.
She sorted me out and was very helpful. On her advice I spoke to the hospital PALS as their information was that the PD nurse was very good but struggling in the systems and admin of the hospital. The hospital did call me back and did then have a good meeting with PD nurse. Didnt have to wait long.