How do you have to prepare for treatment knowing there are limited protocols in place?

How do you have to prepare for any of your procedures in general, knowing that you don't have the appropriate guidance for EDS? grin and bear it to be quite honest. I go into the hospital get whatever procedure has to be done on me and then when I'm discharged that's when I come home and I've just got to put up with the pain and if there's any medication to be got through the GPs I phone the GPs up they're not too happy about prescribing the medication either because they say well why haven't the hospital given you the medication? Why is it down to us? And it's like when I had that infection, when they took the catheter out, I was told I had an infection and they said go to your GP and he'll give you medication. I couldn't believe it.