I just cannot believe our health care system. My OH developed PMR & GCA symptoms in June 2018. Was prescribed 50mg pred in October 2018 by GP. Took 3 weeks to get a rheumatologists appt, who didnt give a diagnosis and told him to get off the pred as quickly as possible. Gave him 6 weeks to reduce from 50mg to 20mg. SInce then he's had all the usual horrible symptoms as he's reduced, managed to get down to 17mg, had a flare (in Jan 19 - GCA symptoms) went back up to 50mg, is now back down to 20mg, and struggling with pain, physical and psychological - every day is different. In the meantime, every single appointment (5) with rhemy has been cancelled and rearranged. He hasnt seen a single consultant since October 2018. In desperation we asked to change consultant, and got an appointment for 10th May, this time with a well known PMR doc, great! Worth the wait. Letter arrived yesterday to cancel it and re-arrange for 7th June. Jeeez!!!
If it wasnt for you guys, we'd be up a creek without a paddle!!!
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Have a word with the Patients Liasion Service (Pals) at the hospital where your well known PMR Doc is and tell them your story and then they will have a word..................it does work.
Dr Saravanan at QE. As luck would have it he's going to be at the North East PMRGCA meeting on Thursday, so will hopefully get to meet him.
Anyone else going btw?
It’s always worth ringing the Consultants Secretary rather than the Appointment Line, be charming but extremely concerned re Husband & mention the risks of GCA, ask her name & her advice on a way forward.......
I can back up ringing the secretary, it does work. Don't take no for an answer, as Mrs Nails says, express your concerns re 5 cancellations and it's not acceptable to have no guidance when he has GCA and his sight could be at risk! Don't forget to say he isn't well at all - is there a cancellation please.
Oh goodness. I do think these consultants should try a week on high dose of Pred and then see how struggling with a broken system feels. Good idea re PALS and be detailed about the effect it has. Also, repeatedly popping up to high doses increases the risk of Pred related complications so the patient is being put at risk. I do think that any consultant withholding or making diagnosis when there isn’t a definitive test result, should clearly state their reasoning. I think you’ll need to dig deep and fight a bit more I think, it’ll be worth it in the end.
Original rheumy didnt say why she didnt think it wasnt PMR or GCA, which I find completely baffling, given that all his symptoms are classic. Just no inflammatory markers. And because he didnt get to the rheumy in time (3 weeks after starting pred) he couldnt have the TAB. Not for trying I might add.. I did everything in my power at the time to try to get an appointment in the first three days, as advised, but no-one was listening. Sooo frustrating.
Persistent polite enquiry is my tack when I’m brave enough makes them have to think it through. It is too big a decision to make without some sort of basis; you can’t make a picture of a puzzle with one piece. If it’s just a bunch, why is it ok for the, to have one and not the patient. The “in my experience” line doesn’t wash either unless they can say what that experience is. I had a fairly convincing Rheumy who told me he was a lecturer (it turned out, in medical ethics) doing a Rheumy stint. I don’t think he’d had much experience at all with GCA because he said a load of rubbish. The good ones aren’t defensive either and are eager to learn.
The TAB wouldn't have shown positive by then as he was already on pred which was masking the inflammation. Having normal inflammatory markers too is no reason to dismiss GCA/PMR - it means they are doing there job. In times like these symptoms are to be listened to.
To be honest I think it probably depends on the hospital. There are hospitals where the PALS people provide an excellent service and I think it is often a good place to start. And judging by some of the hospitals we've worked in, the LAST place I'd have expected help in this context was the CEO's office. Not without a certain style of handshake...
You may also find it an interesting experience trying to contact a secretary these days in many departments!!
You might be right about secretary's, I have spent many a useless hour or two chasing a particular secretary around just to find out who was taking over my care after my consultant retired!
I am so used to PALS being useless I dont reccomend them any more because in the 4 hospitals I covered in legal they either didnt do anything or promised the earth and couldnt carry through. I dare say there maybe more efficient PALS somewhere. I found our CEO'S office quite effective when people complained (it then got dumped on my desk) but again that might be because our CEO was an ex nurse and was quite happy to wade in to things way below her pay grade. I know other CEOs that shouldn't be in the job!
It ultimately depends on the hospital and how persistent you are. What ever way people decide to complain I suggest persistence might be the best way forward.
I've managed to get through recently when I asked to change consultant, so I think it will be OK. Also one of the letters he received in between the change was written by someone who came across as really helpful and concerned, so I'll check who that was and ask for them.
This happened to me while I was awaiting a firm diagnosis. I was mad with anxiety. I called the central appointments people and explained what impact the cancellation had on me and they gave me a new appointment fairly soon. When I went to that I asked if the rheumatologist had left, why the cancellation. They laughed and said it was staff training! Clearly they don’t build training into their scheduling!
When l was an Out Patient Clinic Co-Ordinator, l planned well ahead, l knew which Drs went away when, who went to the Music Festivals, who always took three weeks in August without warning, but l had these Clinics Dates Closed, so even if l hadn’t guessed the exact date l never had to push Patients back l always brought them forward!.......
I wonder if they look back to see how many times they've cancelled a patients appointment before they go and cancel it again.. They don't seem to register that its people they're dealing with... not numbers!
How long did you wait in the end? Did you get your diagnosis?
How awful, frustrating and demoralising! I certainly think given the fact that he hasn’t seen a consultant since October- July is just too long a wait. I too would be inclined to contact the secretary first and be very polite and persistent- the “ broken record technique!” Let us know how you get on.
Thank you Jackoh, very apt descriptive words! I think its time to be persistent, on a regular basis! They'll get so sick of me ringing they'll be happy to make an appointment just so they get a bit of peace!!
(Don't worry, I'll be nice - much more effective than nasty 😇)
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