Hello all,
Thanks to those who welcomed me after my first post here some time back; and thanks and best wishes to all of you who are posting - I find it helpful to learn something of other peoples' stories, and to try to untangle what some of the technical stuff means.
It seems clear I am lucky in the help and support I am getting. Quite a few posts about long waits, uninterested professionals and unclear information. Have any of you tried contacting your Patient Advice and Liaison service? nhs.uk/common-health-questi... They are there to advocate on your behalf, although I can't vouch for how good they are in practice.
I have been sent test results from my liver specialist nurse and even have a direct phone number for her (Fibroscan result is maximum, which is very scary. Bilrubin count has fallen by 50 per cent in a month but is still way above what it should be). However, when trying to chase up my gastroscopy appointment I was put through to at least five wrong departments, two in a completely different hospital! Eight week waiting list, but at least I now have the nurse to help follow up next time if needed.
Take care folks, and bye for now...