So, my first phone call of the day yesterday was to the Royal Sussex County Hospital (RSCH) PALS Department. A very nice, young woman, named Maria listened patiently, while I gave her the "brief" version of my sad story. When I was done, she apologised for my experience, and explained that I would have to put my compliant/story in writing or in an email. There was an official reason for this, but it was somehow lost in translation... No worries, I can put it in writing!
We talked for several more minutes and she asked me a few questions... she then suggested that I send the email to her attention (rather than just the generic PALS email address), apparently, something I said got her attention!
My second phone call was to the Rheumy’s secretary. First, try Voicemail; second try "BINGO!" She listened, but she wasn't as empathetic and authentic as Maria. She implied that Dr Jordan was not aware of this issue and that she {the secretary) would look into it to see what had gone wrong. I got the impression this was the first she had heard of this particular “cock up.”
She offered to try to get me a new appointment, and I jumped at the chance! I was pleasantly surprised when about an hour later the phone rang and it was her, offering me an appointment for next Wednesday, October 24th! I gratefully accepted!!! 👍🏻
I spent about 45 minutes documenting everything in an email and sent it off to Maria. I felt oddly vindicated; not that I had changed the course of history, but I certainly had shed some light on what was a very unfortunate and unfair situation for at least 6 people!
I’d like to thank all of you who reacted/responded to my post. I was overcome by your empathy. Thank you so very much!
It was obviously a very “sore subject” and one to which we could all relate. That feeling of helplessness and vulnerability; when you feel you’re at the mercy of the “powers that be,” and those powers are so much more capable than you.
I was surprised by reaction, standing there in front of the receptionist’s desk. Although I’m not entirely sure why? If I have learned anything in the last 340 days, since my PMR/GCA diagnosis, it is that I have NO CONTROL over anything, except MY REACTION TO EVERYTHING.
I, probably like you, feel that I'm at the mercy of my diseases; at the mercy of the doctors, GPs, Consultants and Phlebotomists. I’m told where to be and when to be there; and then, when I get there, I’m told I’m not supposed to be there! I’m poked, prodded, pondered and pitied. Just another “one in a million.” An insignificant statistic; faceless, if not totally invisible.
...but you know what? I may be old and I may be sick, but (like you) I still have a VOICE and I have more than an ounce of self respect and dignity left in these old bones.
I won’t be ignored and I won’t be trifled with. I will call them out! and I will demand respect.
As Howard Beale said in Network back in 1976... “I’m mad as hell and I’m not going to take this anymore. I'm a human being, god-dammit! My life has value!”
...and so does YOURS!
I have my long awaited rheumi appointment on the same day(24th)..it'll be interesting to see who is more inappropriately happy or inappropriately frustrated afterwards.. hahaha.. I'll be looking forward to your story about the appointment.
And I will be looking forward to your update! Good luck !
Whatever happens... be mad as hell and don't take it! : )
Hello Gaijin - hope your appointment goes well. I wish you well & please keep me updated - Kathy x