I'm assuming this will be different for you guys in the UK in particular with socialized medicine, which we don't have in the US. We had an appt for consultation at UC SF (University of California, San Francisco) for Oct 28th. In the mean time I had decided to that we should go to the leader in treating Myeloma which is in Little Rock, Arkansas. Having worked at a University I know how long it takes for research papers to get into print and that everyone is waiting for what comes out of Arkansas and by the time they get the data, they are about 2 years behind. We decided to keep the appt at UC SF just in case when we came back from Arkansas we had any reservations about getting Dave treated there. Well, I heard yesterday from our Cancer Center here (making the referral for treatment) that they had sent everything to Arkansas but had asked UC SF to return everything that had been sent to them. I was surprised, but didn't say anything (I should have). Then we get a phone call today from UC SF that our Oct 28 appt was no longer available and we had to come down tomorrow (10th) and when we asked when we could have an appt if we couldn't come tomorrow they said, they didn't know (!), but it would be a LONG time!
I was rattled, feeling a bit boxed in. I called a friend to consult and walked through my reasons for going to Arkansas and the reality of what UC SF was doing, which was they were afraid they were losing us as a patient before the consultation and were pressuring us to come there tomorrow. So I felt better about my decision and that Arkansas will be the place for us and if its not, UC SF can come back on the table. So I called and left a message that we couldn't make it tomorrow and oh by the way, I didn't authorize the cancer center asking you to send back the records, that we still intended to come there for consultation. Of course, we intended to cancel the Oct 28 if we were happy with Arkansas.
I didn't like it at all they did this, instead of just calling us and asking "why, what's going on?" I could have told them to keep the records and that we would call when we got back from Arkansas.
