Skip to main content

Table 5 Support, care and post-diagnosis

From: Patient understanding and experience of non-invasive imaging diagnostic techniques and the liver patient pathway

“I walked in there and there were two guys, similar age to me who’d had a similar experience in terms of the longevity of the infection and they had both been through the treatment and been successfully treated and were feeling much better. So it was a real—just to hear someone else’s story. For me, it was vital.” James, 60M with Hepatitis C
“It is good that you can have a moan and people understand that moan, and people are going through the same thing as you understand it. Whereas when you are talking to general public, you don’t like to keep on—you feel like a whiner kind of thing. When people ask ‘how are you?’, I often say I’m fine when I am not—because they don’t want to hear it. Whereas on the support group everyone is sharing their experiences and you feel like you can do that.”45 with PBC
“The thing is any knowledge I have about the condition I have has been provided through the support network that we have. Doctors have never sat down with me and said this means this and this means this. If I have an understanding, it’s one I acquired myself from using the support mechanisms that are out there through voluntary organisations that support us.” Jean, 43F with PSC