Vasculitis UK
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Still in limbo, and official complaint

I'm still waiting for more news about possible change from cyclophosphamide to rituximab, and for the biopsy! I have now received my next clinic appointment for 5th April. However, my nasal hole is getting sore and headaches have returned, so I don't feel like I'm getting very far again.

Maybe they're waiting for blood test being done on Thursday?

I don't believe this can be a flare, because I don't think I've been fully in remission yet!

Also, I've had a further reply from the West Suffolk hospital regarding my complaint, but I'm still not happy with it, and feel I should resort to the ombudsman, and try for an independent review.

(Has anyone else tried this?) My husband doesn't think I'm going to get the explanation I want!

5 Replies

Dear suffolkgirl,

I'm not familiar with your case, I don't/can't read everything but if you feel you have a strong case do pursue it. Nobody ever got anywhere by NOT doing 'something'. Go for it anf make your case and good luck.



Well, my main complaint is that it took 14 weeks to get an urgent biopsy done, in spite of phone calls from myself and my GP! Since I made a formal written complaint I've now had two apologetic letters, but they still don't explain the reason for the delay. I've threatened to go to the ombudsman, but I'm not sure if it's worth doing, because I'm already being fobbed off and I don't believe the ombudsman will be given a true story.


Dear Suffolkgirl,

If you make enough 'noise' they won't DARE 'fob you off'. My advice, for what it's worth, do pursue it; the ombudsman canot easly be 'fobbed off' if he/she takes up your case.

Please do let me (us all) know will you and good luck.



Thanks for your support. I'm still considering my next move. However, as I understand it, the ombudsman will not necessarily conduct an independent review if he/she is satisfied that correct procedures were followed. My fear is that he/she will not be told the true story, as the letters I've already received do not paint a true picture.

I know I should keep plugging away, but it's not easy when I'm not feeling 100%, and I think they take advantage of this and hope I'll go quietly away!


Quick correction to earlier post. It took 10 weeks, not 14! Sorry to mislead anyone. Blame it on the disease and/or the meds! Still not acceptable, in my opinion.


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