Living Without HepC

I’ve been re-reading a post I wrote, but never published, in June 2005. Whilst on treatment I kept having ideas about moving the issues of Hepatitis C further forward: increasing awareness and improving support for people with hepC (on or off treatment). I also realised my limitations on treatment prevented me from doing anything at the time so I shelved that post. But it’s interesting to look back and remember that my mind wasn’t totally fogged up despite the meds:

These are ideas which have taken my interest at this point and for which I can formulate some plan. There may well be others – and some of these may be non-starters.

Project One
Establish an online portal Hepatitis C Forum site, providing links to HepC blogs within the community, featuring recent updates from these blogs, access to discussion forums, chat room services, listings of news items on Hepatitis C, and providing links to Hepatitis C resources and other relevant sites.

Project Two
Establish a counselling service specialising in working with people who have Hepatitis C
Establish a network, with an online presence, of counsellor therapists offering face to face, telephone and internet counselling
Establish and deliver counselling services to Hepatology units or other organisations dealing with people living with hepatitis c.
Establish and deliver training modules, recognized by the BACP (British Association for Counselling & Psychotherapy) as Continuous Professional Development, in working with people with hepatitis C.

Project Three
Apply for funding and operate a pilot project for a dedicated online support service for patients preparing for and undergoing treatment at one Hepatology centre. This support would include an online counselling element, individual blogs and group forums. It would be accessible only to patients of that centre while they are attending the HepC clinic. This could then become a model of support usable within other Hepatology units in the NHS.

Project Four
Establish and deliver training services for medical professionals and or other groups where I can use my previous training experience and ‘expert patient’ perspective to help professionals develop their skills working with people who have hepatitis C.

Project Five
Establish a loose collective of professionals who live with hepatitis c who can together create or cultivate joint ventures contributing to the awareness or development of services for hepatitis c (eg –collaborative writing, film, etc). Other people on treatment have already suggested ideas to me and collaboration could be a realistic way of moving these ideas forward to fruition. There is additional power in working together.

Seven months later, I can see some of these ideas aren’t really ‘starters’ and some are huge projects. And some are projects I’m not sure I would want to be involved with just now.

However Project One, an online portal for Hepatitis C, was so compelling that I purchased a domain name at the time and have been holding it unused since then. When I established the Forum in May 2005 I could see there was a need for people living with HepC to connect with each other and not just use their internet connections to read the blogs and the latest HepC information and news (although there is a need for these too).

It did seem an odd anomaly though to operate a discussion board as an adjunct to my personal blog about treatment. I am delighted the Forum has taken off and become so popular, despite the somewhat obscure internet location. However, The Hepatitis C Forum deserves a site of its own. And a portal will not only provide an independent home for the Forum - it is an ideal place to gather together various HepC elements, making a one stop access point and a community focus for and by people living with HepC.

I’m very excited about the new site and really grateful for the professional expertise given by Ben. He had previously advised not saying too much about this project until it was actually underway, so I have been keeping quiet over the past few weeks while we have again been discussing it more actively. But I notice Ben has recently written about it in his blog (Catch up post, December 29th 2005), so at last I can also talk about it. I also notice Ben has listed some of his work projects on his blog so he can’t really complain if I qualify (or big-up in a fatherly way) his professional expertise by pointing out he has been the lead developer on several sites for BBC News & Sport and BBC World Service and is now the founder and Project Lead for BBC’s successful developer network, backstage.bbc.co.uk, a key part of BBC New Media’s innovation programme.

As for the new website, I don’t know about timescales yet but the project is taking shape and we are looking at formats, layouts, etc. It’s the same partnership as before – me doing the thinking and talking, Ben doing the thinking and programming. I will update on progress and developments as we go.

The new site will be home for the Forum, list recent HepC news and updates from the listed blogs, provide links to information and other resources. There is enormous potential to develop other services – chat rooms, more forums, buddying programme, and lots more that hasn’t been thought of yet. For me the important thing is establishing an online community presence for and by people who live with HepC.

This entry was posted on Friday, December 30th, 2005 at 4:08 pm and is filed under Journal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.