So frustrating


#1

I've finally received my referral appointment with the movement disorder clinic - for next March. This is six months after I last saw my neurologist (when he said he would be referring me) and, ironically, the same day as my next neuro appointment.

I know waiting lists are long but I really don't know how I'm going to cope for the next four months. Walking is getting more difficult, as is work - just sitting at a desk makes me ache all over. I can't take much time off work because I temp so I don't get paid if I'm not there. I'm also in the middle of a really big project, which is going to get even more stressful in the new year so I need to be as fit and well as possible.

Sorry for the moan, but this has got me really down.


#2

Try phoning the consultants secretary ( just ask to be put through at hospital switchboard) and ask if you can go on list for any cancellations . Explain desperate it may help .

x


#3

Thanks Kittens3, I'll try that. 


#4

hi tabbycat

             have you spoken to your pd support worker about claiming pip its not work related benefit & the money you get may help with those days you cant manage work!


#5

I don't have a PD support worker! I don't even know what one is or where I'd get one!


#6

Hi Tabbycat,

This page on our website has some details on information and support workers with a link to search for your nearest: https://www.parkinsons.org.uk/content/parkinsons-local-advisers

Hope this helps.

Best wishes,

Joanne 


#7

"post vacant".sad face


#8

Hi Tabbycat,

Sorry about that - if you try the Helpline they should be able to put you in touch with someone who can help - 0808 800 0303.

Best wishes,

Joanne 

 


#9

Thank you Joanne, I will try the helpline over the weekend.

In the meantime, I phoned the movement clinic to ask about an earlier appointment and was told to ring the neurologist who originally referred me, as he referred me for a "routine" appointment - hence the four-month wait.mad

Of course, the phone number I was given just goes through to voicemail (I left a message on it once before and never got a response so I won't bother again).


#10

hi ,i know its soul destroying but get angry,get tough and get back on that phone !!!

again go through switchboard and ask for your originals neurologist  secretary ... you'll get more sense out of the secretary !! 

unfortunately you have to fight your corner to get things in the nhs . have you tried your GP ...maybe e can re refer you as urgent ?do phone the helpline ..i phoned them about medication and were v helpful 

x


#11

It was the neurologist's secretary I was phoning, Kittens3 - it always goes to voicemail.

Last time I asked my GP, she wrote to the neurologist to chase up my referral and this appointment in March is the result!

I feel like I've fallen between the cracks. GP doesn't want to know/can't do anything, original neuro thinks I'm atypical and referred me to the movement clinic - only he forgot to do this for a month and then referred me for a "routine" appointment instead of an urgent one. Can't get a PD nurse until I have a definite diagnosis, and there's no local PD support worker.sad face