> Maybe there should be a system to filter actual complex cases up layers of specialty
I mean, this is normally your GP referring you to a specialist, and 99% of the time that works. But when your specialist doesn't even know enough to know where to refer you next you end up in a weird space that is incredibly challenging to navigate. It would be good if there was an "expert diagnosticians" group that you could go to when even specialists are stumped. They could help navigate referrals to specialists, tests-of-treatment and enrollment in trials (which is a whole other minefield).
I mean, this is normally your GP referring you to a specialist, and 99% of the time that works. But when your specialist doesn't even know enough to know where to refer you next you end up in a weird space that is incredibly challenging to navigate. It would be good if there was an "expert diagnosticians" group that you could go to when even specialists are stumped. They could help navigate referrals to specialists, tests-of-treatment and enrollment in trials (which is a whole other minefield).