Appointment 🤬

[barbdockeray]

Hi everybody I had a rheumatology app last week. .my Docters phone up as it has been a year since last seen a consultant. I went thinking I was seeing main consultant but seen this locom . He proceeded to tell me I have lupus doh . Then ignored all my questions just saying lupus lupus . Came out very upset 😠. I have stewed on it I phone the hospital and spoke to the rheumatology nurse put a complaint in . Apparently I was not the only one the locom has been removed . I then phone Docters put another complaint about how I have no support for my lupus and feel totally alone dealing with it . Sorry for rant . By the way I am getting another appointment with the rheumatology. I just feel like a none camodity . With this hidden intolerable illness. . Thanks for reading . X

[Hidden]

So sorry you had this awful appointment and feel so alone with your Lupus. I feel similarly with my Sjögren’s even though I’m seen more often than you are and not by locums or registrars. I think and fear this will change to a similar situation to yours as I can’t tolerate the medications and they just blame Sjögren’s for everything similarly to the way Lupus gets blamed for you.

It is very isolating and I think it’s good that you keep contacting Rheumatology yourself when you feel worse.

At least we do have this community where everyone understands. X

[barbdockeray]

Thankyou it is nice to have the support on this site x

[HedgeEnd]

They really shouldn't use locums in place of consultants. No wonder you came out feeling upset. I hope your next appointment is better x

[eekt]

You're right to be upset, and it's FaBuLous that you've acted on the poor treatment you've had 👏👌

The sole UK NICE-accredited guidance (the BSR Guideline) for the management of lupus (SLE) says:

"Lupus patients should be referred to a physician with experience in managing lupus"

academic.oup.com/rheumatolo...

Go to your next Rheumy informed and with a list of things you expect from the consultation. Write it all down, take a copy, leave a copy with the Rheumy if there isn't time to get through it all at the appointment. Stay strong💪💪💪

Ask how you can contact your Rheumy - it might be leaving a message with his/her secretary - if you have a change in symptoms or medication problems:

"Patients should be told to report to clinicians if they develop any new or significant worsening of clinical manifestations." - BSR Guideline

You should have a monitoring appointment every six months at least - hopefully your next appt will get that scheduling up and running. You're never alone on this lovely forum! xxx

PS Did you try for PIP again? x