Communication or lack of ??

anita01 Member Posts: 43
edited 28. Mar 2011, 10:50 in My Child Has Arthritis
Hi Is anyone having difficulties with their local hospital and tertiary hospital not communicating with each other ? I feel that is being left to me to get an update from Gosh, to tell locals what the latest news/plan is, whether application for funding is still ongoing or not successful or not?

We seem to be in limbo (again) , and time is ticking on, really want to get my 8 yr old off her steroids .

I am waiting for someone to get back to me today but if I don't hear I amm going to phone OPD sister locally and ask her or our local consultant to phone up, otherwise it will be wasted appointment..Grrrr...


  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Over the past 15 years of dealing with this malarkey I have learned one or two valuable lessons. One of them is this: never, ever expect people to do their jobs, the time one loses waiting for that to happen can be enormous. As patients we have to be much more pro-active than one might expect. You are your daughter's representative and you will have to do the required harrying and chasing up to ensure that what is promised materialises. Occasionally the docs get together and spring a surprise and stuff suddenly happens but usually we have to be the ones doing the ringing and following up. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dartgirl
    dartgirl Member Posts: 7
    edited 30. Nov -1, 00:00
    So far i've been extremely lucky, the consultant peadiatrician from Frimley always attends the clinic with the reumy from Oxford, so she knows what going on and the staff at the childrens centre seem to have a great rapport with the whole team in Oxford. brings so much confidence to you. But by talking to other people it seems as the patient u have to do all the running usullay. Not right but thats the nhs for u. Hope your experience gets better, and keep fighting!!