Not getting correct treatment.

[Iona467]

I have had serious lung and kidney infections Lupus related, however, my Rhumatologist has ignored them all, saying this doesn’t happen with Lupus.

His boss contradicted him recently.

Too late for me with stage 3 kidney cancer and terrible lungs.

My dilemma is that the overall authority tried to fob me off with a meeting with a nurse, after my cancer, having to meet me when I refused to continue with someone who clearly didn’t have a clue and wasn’t expecting to talk to me.

2nd visit, my usual Rhumatologist sent me to a junior doctor, having to be called in when the person was awed by my ill Heath and wanted a second opinion. I told the usual one how he had humiliated me for years and look at the consequences, he didn’t say a word just hung his head.

Just changed Rheumatologists and again saw a junior who couldn’t help me and orders more blood tests.

All I ever have is a blood test each time I go but no treatment.

Anyone else experiencing this?

[Iona467]

Here we always see the main person, I belong to a local Lupus Group and they all agreed with me, it has changed only since they found out about my cancer.

I did complain to Pals, a long time ago. The result was that the Rhumatologist tried to get me thrown out of the hospital. My GP backed the Rhumatologist and told me she would personally stop my treatment if I moved, I was also unable to see other doctors at that time. I was extremely ill and stupidly stuck with this. From that day on my care has been atrocious, couldn’t even see my own blood tests or get anyone to talk me through them.

I’ve asked many times to see a Lupus specialist in London, as many of my contacts have, always refused. Now have a new GP and he has sent a letter to the new Rhumatologist, apparently only they can OK it.

I did go privately but locally it is the same Rhumatologist as I was seeing. Only difference was that I found out more, rather than another specimen and blood test rash time.

As my symptoms are being ignored, I would prefer an opinion from a specialist who can advise me.

It’s very worrying to be left with one kidney and the Lupus means when I’m sick I have infections in my kidney. The last one was for 5 months.