Living Without HepC

Carol and I went to the annual conference of the National Hepatitis C Network this past weekend. The conference was organised by Janie and Gary McCann who founded HCV Alert, one of a number of Hepatitis C support organisations around the UK. Through their determination and hard work they established this conference last year for the purpose of bringing together HepC support organisations and groups around the country. And this was the second annual event.

There were about 20 of us plus speakers. Charles Gore, The Hepatitis C Trust, gave a presentation on awareness raising plans over the next year. Ed Gyde and Chris Duncan, Munro & Forster, reported on the activities of the Department of Health’s Face-It campaign over this past year and briefly outlined plans for the second year of the campaign. Janet Catt and Lynette Baldwin described their work with HepC patients at the Ipswich PCT.

It was really great to meet new people from around the country who are involved in supporting people with HepC and to see those we already know. The conference meeting was a long one but there was ample opportunity during the evening before and after to spend time relaxing and talking with other people.

Special for me was the opportunity to see Nick & Vicky and Martin & Carol again. Nick, Martin and I were the first HepC bloggers with genotype 1 to blog through treatment and have been involved over the past year and a half with the awareness campaign. Michele Martinoli took this picture of the six of us for our scrapbooks.

Click here to see more Conference pictures taken by Michele, me and Carol.

For me, the conference and the presentations raised issues about the need for services, the lack of funding, the necessity for awareness raising and politicking and the requirement for close co-ordination to achieve aims. I don’t really want to comment much more about all of that today – except to note that Munro & Forster have made the commitment to better utilise their existing HepC ambassadors in the planning and delivery of their awareness campaigns.

And to point out that Janet and Lynette are responsible for a clearly patient-focused HepC service that cares for and support patients through both flexible in-hospital and in-community services, aiming to meet individual needs. It’s not just a ‘one size fits all’ service that we hear about in so many hospitals. I hope their patients appreciate their commitment and caring and I hope fellow professionals listen to how they deliver their service and emulate their model.

Over the next year NHCN aims to become more active in moving the HepC agenda forward. One of the first items to be addressed is to identify and record in one directory HepC support groups and organisations throughout the UK.

So if you know about a HepC support group or organisation send me an email at ron(at)ronmetcalfe.com [of course remove the middle bit and replace with @] and I will pass the information on.

This entry was posted on Tuesday, April 11th, 2006 at 3:42 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.