An interesting article appears in the BMJ today:
Wicks E. A patient's journey: cystic fibrosis. BMJ 2007; 334(7606): 1270-1.
Two things especially caught my eye:
1 - when the author was diagnosed, her parents went to the library, having had no information about CF from the hospital. This was in the days before the Internet, so was some time ago. They found a 15 year old book, which advised that they should bond with their new baby too much. There are areas where books do get very out of date!
2 - "Patients need access to information about cystic fibrosis. If professionals do not provide the right information at the right time, patients will go and look for themselves. Plenty of good quality information is available, but there is just as much incorrect information, too, especially on the internet. Patients need to be able to filter out misleading facts, or have access to people who can guide them. " And so do students, and health professionals!