Sorry - need to vent. Saw consultant and ms nurse 5 weeks ago and we agreed that I’d start on rebif. Decided to ring today to see if they could give me some idea of when I’d be likely to hear from drug company and nurse told me that the co-ordinator had made a ‘monumental cockup’ of the requests/prescriptions and mine hadn’t been sent. So, she sent it ‘again’ and I’m basically back to where I was 5 weeks ago, looking at another 4-6 week wait. I’m really cheesed off. I know that in the greater scheme of things another few weeks won’t make a massive difference but I had been stressing about it and now just have even longer to stress! This is my first experience of the ms nurses and I’ll admit to not being very impressed :(. She promised to send some info too when I saw her and that never came. Also thought that she was very unorofessional in how she described the co-ordinator (though she did say ‘she’s gone now so things should get better’). Feel worried and out of control but don’t want to make things more difficult as she’s my assigned nurse.
I can relate to this i was given the go ahead to start avonex in april 2012. But due to a cock-up by my hospital co-ordinator didnt acturly start the drugs till jan 2013. Not impressed but then again in the 2 years i have had ms, i have had 2 mri,a lp, vep and countless blood tests and have not seen results for any of them. Just told rrms and told to go on msdecision website.
Its frustrating but i know many ms nurses are run a little thin.
Plenty of fellow rebif users on here that can give you some tips for when it arrives.
Goodluck you will be fine!!
Yes, I was also wondering why the nurse hadn’t got a note in her diary to chase this up. Surely after 5 weeks she should have been contacting you to discuss a treatment start date? I would be feeling let down too. At my hospital they keep me more informed than this when there are delays.
Well someone has obviously been sorting things out because I’ve just had a call from Bupa and they’re delivering tomorrow afternoon. So panic over in one respect and feeling panicky in another! Bit scared now Need to arrange to see the nurse for my training.