Living Without HepC

I have been doing a lot of thinking recently and have reached the conclusion that it is time for me to withdraw from The Hepatitis C Forum. Time to move on.

The Forum has changed over two years. I have changed over two years. Time to move on – both me and the Forum.

I am finding it hard to know what to say about my reasons for reaching this decision. Over the past 10 months I have taken a low profile on the Forum, due to work commitments. By the time I logged on twice most days and cleared the spam and said hello to new members, that’s been it. Now I hear that a lot of people don’t really know who this “Ron” is and I can understand why.

Over this time, CarolJB has really grown into her own as a Moderator on the Forum and has developed a sure and steady approach in her response to new and old members alike. I am very impressed – and I know others are as well. She is compassionate with people and very skilled in picking up the issues that need to be addressed.

Two and a half years ago I started this online diary about my combination treatment for genotype 1a. As far as I know it was the first (or at least amongst the very first) weblog about HepC treatment on the net. I am pleased to say a lot of other blogs have followed. As my blog progressed and was read by more people, I realised readers wanted to talk to each other through the comments they left on my blog. So I set up a Forum, with technical support from my son Ben.

I was so full of interferon and ribavirin I could hardly follow the ins and outs of the technology and software. Despite side-effects I was determined to establish a Forum meeting place. I explored and established links on a number of sites, spoke to people at the BBC, the British Liver Trust and did web chats at The Hepatitis C Trust. (This was as well as taking part in the Face It campaign).

I spent a part of every day of my treatment posting to other people who found the site. I commented on HepC content, moderated on online behaviour and supported my peers through their hard times. It was a challenge at times to maintain an even-handed approach with the emotionality of the treatment drugs. It proved to me it can be done and the importance of respect for each other. The whole Forum experience really helped me through treatment too. As it did a number of others. And I can see and hear that this is still the case today for members.

The Forum has grown and I have grown away from it. I am no longer a person living with Hepatitis C. I don’t have Hepc. I am not on treatment, nor am I post-treatment nor am I living with someone with HepC. I am not a patient. I think that fundamentally my connection has diminished and changed. Time to move on.

And time to turn over the ownership and responsibility for the Forum to others whose connection will be stronger.

So what will happen with the Forum?
I would be very upset to see it wound down and closed. I am certain it continues to be a useful support to people living with HepC. I think I was right to identify that there is a need and a place for an online support forum; I think that need will continue as more and more people are diagnosed. I am pleased to pass on The Hepatitis C Forum as my legacy and contribution to the Hepatitis C community.

So who will I pass it on to? There are several different possibilities:
• A HepC organisation like The Hepatitis C Trust or the NHCN
• An individual or a conglomerate of Forum members who are prepared to make the commitment to own and operate the site

I have begun initial discussions with organisations and am now interested to hear from any individuals or groups from the Forum who want to be considered. I think it presents interested Forum members the opportunity to put into effect the ideas they have about the way the Forum should operate.

I have asked Forum members who want to be considered to contact me direct.

Technical Information that people will need to know.
The Forum database requires 1 gigabyte of server space (at the present time) and 8 gigabytes of bandwidth per month. Having said that, there needs to be the capacity to increase this figure as the Forum is growing (and people are already reporting difficulties at times). There is also a need for proficiency in MySQL and php (running phpBB2). Ben reports that the current programme could do with an updating; amongst other things, there isn’t an adequate spam filtering system on this current build.

There are also some issues about data permissions that need to be resolved For example, at sign-up members have agreed I can see their data (email addresses, etc) but that agreement does not extend to other people. So this needs to be formally re-negotiated with members.

I don’t yet know how I will reach a final decision about passing on the Forum but I will undertake to keep people updated through the Forum itself in the Service News threads. I am aiming to sort the matter out so the outcome will be clear by the time of the NHCN conference on 14 April.

This entry was posted on Wednesday, April 4th, 2007 at 11:03 am 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.