46 days out of hospital, some thoughts...

[whodunnit_author]

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...

[Hidden]

Hi

At least she can perhaps do some chasing up if needed. Love and hugs Lynne xxxx

[Countrywalks]

Uninterested profesionals that just about sums it up youd get better diagnosed by the local vet than some of these people who are anything but proffessional they now think they can diagnose you without actually meeting or examining you. No wonder there are so many misdiagnosis cases going to court if this is the attitude of some of these casual acting professionals . I wonder what they will have to say when it comes to light that you had a condition and they put there name on a piece of paper saying you did not. These actions Will come back on them make no mistake about that. This kind of thing will not be tolerated and investigations shall be imposed . Like you mentioned pals would be a good start .all i can say is there are a shortage of heptologists now what will it be like in years to come if liver disease is on the rise and not enough drs trained in liver disease to cope i dread to think . I do think gps should play more of a roll in detecting liver disease with better blood tests and fibro scanners being available at some gp surgereys .this could save time and many lives too catching problems early before symptoms show and its too late . I dont know how much a fibro scanner costs maybe they could have fund raising events to help purchase these in the local areas . The gps could do a short course to learn how to operate it and people could find out in just a short time if theres a problem .