I have had a very frustrating/depressing 3 months, battling with a surgical team to get a date for an operation to take my spleen out (decided last Sep to hopefully stop AIHA). There must be others who have done this better than me, so what are top tips for others that might have to face the challenge of non-communicative medical depts.?
To cut a very long story short, I had total non-communication (no response to emails/ansaphone messages, errors in out-of-office replies and certainly no-one actually answering a phone!) from the surgical team. Also lack of CLL understanding on the surgical side (perhaps no surprise - I think I am only 3rd case this year on my CLL/AIHA path, and I am in a major CLL centre).
However, key (I eventually found out) is I hit a low point of steroids for surgery (so it is like a flight path....you need to know time/destination to plan decent....something I explained v carefully at my surgery consultation). Also it turns out the Op will not only be in same NHS Trust as my great haematology dept.....it is in same building!
When, last week, I finally got a date (and not date range initially talked about, so I have had to change flight-path), I quickly realised they did not even know recommendation of an Ultrasound (USS - which surgery had commissioned) was that I needed an MRI (on a past hernia surgery), so they know what they are facing when wielding knife.........in the end, I sent them the USS results (which I had got from haematology)........
At the front of my mind is that I really do not want to annoy man-with-knife........should I have been more persistent/stroppy (not sure how I could have been)? should I have gone into clinic without appointment? What can you do in this situation?!