Just want to get some perspective on this as not such how these things normally work.
Me and a number of my family have a rare genetic condition (think brain disorder) which has been a huge burden over the years and we’ve lost multiple family members without much explanation, due to the rarity of the condition and little research. At one point we were all under the same hospital, but since moving away, I am now with my local hospital.
Recently there was a big breakthrough and turns out it’s unlikely the condition they originally thought is the issue at all, meaning we’ve all been misdiagnosed and all the treatment / check ups have been pointless.
My mum and other family received a letter explaining in detail all this, with apologies etc and how they are moving forward but I haven’t had a letter, and only know after my mum told me (she got the letter a couple of weeks ago). Am I right in thinking I should be informed regardless of what trust I’m with now? Or do they just expect me to get this info from family?
I also had an appointment for said condition recently and it wasn’t mentioned by my consultant, which suggests she doesn’t know of the latest news either?
Hope that makes sense.