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.
FormerMember
It looks as though you have confused them. I would think that the world over, hospitals that think they are giving good care really really don't like losing access to records that they have compiled over several years sometimes.
Not passing on records seems to be a perennial problem and I think in your position, I would have made every attempt to make tomorrow's appointment (today now) if only to accept all opportunities. It would at least have given you the chance to explain your reasoning, or to make peace with the team that has cared for your husband and maybe collect the records yourself. Relying on the safe arrival of records between hospitals is a bit naive. Yes, often they do show up safely and on time, but when your life is at stake, you wouldn't want to rely on it.
I suppose it is too late now to arrange another appointment, but it might be a good time to ask for a "copy" of the relevant records on the grounds of access to medical records. Then you wouldn't show up in Arkansas empty handed.. Then you can thank them nicely for all their "help", after all if you needed their ER help, a good relationship would be useful.
Here, you can go private (either paying yourself or through your very good job paying for you), or you are "on the NHS". Private hospitals are obviously much more attractive, see you much more quickly, but, for the most part, after doing the chemotherapy, send you to use NHS faciities for radiotherapy. Private, you will also possibly get to see exactly the same consultant as you would have done at the NHS hospital, only sooner, and they will treat you far more courteously. On the NHS you are allowed to ask for a second opinion, and would usually be sent to another hospital for this (quite a long way if you have no transport of your own) - however this is not advertised or suggested even when you are given a terminal prognosis - you just have to know, and you really have to fight to get transferred to the good guys. It is going round an obstacle course and if you are NHS has to be done via your gp or the existing consultant (who as you point out might not want their mistakes revealed elsewhere). If you are private you could get seen the next day - on NHS weeks away.
However, as some of us know at the start, and the rest of us only realise when it is too late, some hospital departments are much better than others. Some doctors within those departments are better than others. Obviously you - all of us - needs the best possible treatment to get best possible result. I'm not sure how it all works with the US system, but I want to wish you good luck with Arkansas. What I have tried to have arranged with my new London hospital is that they will do the brain work, and then any spadework is done by the local one - not surgery, but radiotherapy, if it is needed, as a three hours train/underground trip would be impossible every day. By the way, in Germany, my cousin got inpatient treatment, and afterwards was sent on a "Kur" to a health spa. The do however pay quite a lot into their Krankenkasse, and their contributions rise if they have had a serious illness.
xxxx Penny
Sending you lots of love, and hoping this is resolved without you getting all this unnecessary stress. In these days of computers, everyhing can simply be put on disc. It is not like they are giving up the only true copy. Are they getting upset because this means that they will not be able to bill you? xxxx Penny
That's just it Ruthless, we have never been to UC SF. Our Cancer Center here that we work with sent records there for us and then on their own requested records sent to be returned because they knew we were going to Arkansas. It was our cancer center here that assumed we had already made a decision firmly to go to Ark and thus created a bit of an issue by arbitrarily calling SF and asking for records to be returned.
My point was I didn't appreciate SF trying to pressure us and take away our appt and make us come today. Would have rather they just called an asked. Didn't like the apparent manipulation.
Thanks for the education on your healthcare there. It sounds like we both still have systems where you have to figure it out on your own how to get around obstacles to good treatment!
I think they may not have wanted to lose the patient and of course they wouldn't be able to bill, but I was just annoyed as I was feeling manipulated instead of just an honest conversation. Oh well. Movin on! Thanks for your support Penny!
