Where have you found/received the most useful info about HCV?
Share your experiences and interact in the comments below! 
What / where has been your most useful i... - Hepatitis C Trust
What / where has been your most useful information source?
Written by
CalvinHU
To view profiles and participate in discussions please or .
15 Replies
•
I have found the hospital clinic were originally very informative but since then i have researched on the internet and social media. However, my consultant is one of the top liver guys in the country and he advised to just listen to him!
It sounds like you've been lucky and got a good care team x
I'm lucky Tess. I live in Nottingham where there is a big teaching hospital attached to the university. Some of the top people are there and offer the best treatments. I'm involved in the research now for the past 5 years as i'd like to give something back. I read about people not being able to get treatment and i can't imagine it. I also know about people having treatment for 6 months and it doesn't work and they go on to it for another year and it still hasn't worked. They have my sympathy, they really do.
It's great that you had a good experience with your hospital. I changed my original referral from my local hospital to another in London with a specialist Liver Clinic where the consultant was said to be the leader in his field. And they had a rare Fibroscan machine at the time so I could avoid a biopsy to evaluate any liver damage. I saw the consultant twice in 6 years and a different registrar/student at each appointment. A few times, it was me letting them know the latest news on Hep C.
On the intitial appointment where he popped in for 3 minutes and gave a lecture mainly on how great he was. The other time was before he referred me to the clinical trial after months of my emails and calls to the trials clinic itself, bypassing the usual clinic where my questions went unanswered except for "you're on watch and wait" but "can have interferon and ribavarin at any time". All the information I received on the virus and illness was through my own efforts, the hospital was for information on my liver damage levels, blood counts and blood pressure. Then a minimum 6 week wait for the results which, of course, were out of date for the next appointment. There still are no leaflets or information about any liver-affecting diseases on display in the waiting areas of the swish new Clinic.
I have never met my consultant!
All this makes me realise how lucky i have been. My treatment was 10 years ago but my consultant was very good and kind. I have nothing negative to say about any of my experiences with him or his team.
The hep c Trust without a doubt...they have been brilliant from the start, in particular the French chap who was the 1st person I spoke to when I called their help line when I was first diagnosed. I think I would of been totally lost without those guys.
I agree Tess. Max is the French chap, he is a star.
He certainly is
To be honest places like here or general research on the internet and forums talking to others not from the professionals treating it. More support from people who have it as they understand than from professionals. There is a stigma that comes with this but for everybody that's not the case and even if it was why should it matter. It's a disease that is curable now yet still not enough is being done to support and help those going through the turmoil and life changing things that happen once diagnosed, no support or anything while waiting and from the sounds of it none after treatment either. Why??????
How long since you were diagnosed?if you don't mind me asking,I had a look on the liver trust site yesterday and some people have been done and dusted in a year!from first diagnosis,so things are moving forward in some areas at least,I know this doesn't help you but you have a right to raise your concerns about your treatment plan..or lack of one.
The most useful information source for me was the Hep C Trust. From beginning to end they have the up to date information, relayed via their website, during support group meetings, workshops, conferences, leaflets or their invaluable Helpline. All the staff have personal experience of Hep C so undertand all aspects of the virus.
As far as I know, none of the medical staff I came across had lived with the virus themselves so were focussed on their targets and results, the system itself as well as their own careers.
Totally in the dark until I learned how to find my own way around an I pad..
Being diagnosed coinfected with HCV & HIV my first information came from my Consultants within the specialist clinic. I also used publications from i-Base, Guide to hepatitis C for people living with HIV i-base.info/hiv-and-hepatit... . I also used Terrence Higgins Trust & Hepatitis C Trust & Positively UK. And attended workshops. Hep C - Protect yourself workshop and HepC Re-Infection Prevention Workshop both at Mortimer Market Centre in central London. Everything else came from internet searches.
Hi all,
My consultant and the team at my hospital. I also found a couple of reliable sites on the net for additional info about Hep C and the liver when I was first diagnosed. Helpful for dietary advise, what supplements to take, ones to avoid, stuff like that. Also went on Hep C forums where people exchanged information and just chatted in general and gave each other support.
K
Not what you're looking for?
Moderation team
sam_hepctrustPartner