National Hepatitis C Network Conference 14/15 April
Great conference and getting better each year. The NHCN is now on the map and establishing itself as a stakeholder in the UK Hepc world.
Over the two days there were speakers from The Hepatitis C Trust, the British Liver Trust, HepC Resource Centre, the NHS and the Peacock Project.
A panel of representatives from the above organisations shared the platform and along the way referred to the possibility of a cohesive network of hepatitis c organisations working in tandem. Exciting possibilities there. For example, the notion opens the doors for projects – like the British Liver trust’s current work on developing a model for patient support groups, to be shared and co-worked in conjunction with the other organisations rather than just stamped with their own brand. A model for all hepc support groups, developed and led by British Liver Trust and underwritten and supported by all hepc organisations.
Are the organisations ready to work in tandem and in partnerships? There are some budding collaborative partnerships already – the Face-It Campaign and The Hepatitis C Trust have jointly produced information packs for the Asian community. Good stuff. That way everyone is not re-inventing the wheel.
A brief rundown of the speakers:
Dr. Niccie Rowan of the Hep C Resource Centre outlined comparison between the Awareness Campaigns in Scotland and England – with Scotland perhaps benefiting from a later start and lessons learnt from the UK campaign. As Ross Holden, Deputy Chair NHCN, later pointed out the UK campaign has vague objectives, no timescales and no one to hold to account for the outcomes.
Siobhan Fahey, Specialist Nurse, talked about the successful support group run by the Peacock Project and its power. She referred to the growing power of having patients accompanying a nurse to negotiate service plans in the NHS – giving the nurse increased political power and clout in the discussions. Patient power is a good thing but will it become the only way to ensure professionals do provide the services they have the responsibility to provide? That becomes patient policing. Ach, that’s a long way off in the future and not worth worrying about yet.
Sara Cole acknowledged the British Liver Trust’s absence from the HepC scene over the past few years and talked about her recent work surveying needs and views on support groups for liver disease patients. The survey looks at all types of support, issues and practicalities. They plan to produce a ‘how to’ manual and types of support programmes for group leaders and levels of affiliation with the British Liver Trust.
Joy Millward from The Hepatitis C Trust is a parliamentary lobbyist. She outlined the intricacies of furthering the HepC cause in the parliamentary world (such as EDM’s, Early Day Motions), delineated the value of patients writing to their MP’s about HepC issues and described the work of the All party Hepatology Group.
Dr Michael Ashton gave a very personal account of his own journey with hepC treatment following a needle stick injury. This has given him a very subjective and sympathetic view of the patient’s experience of hepc. And an avid interest in the issues around how needle stick injuries and hepatitis c infected medical staff are dealt with in the NHS.
Over the two days most of us at the conference were delighted to identify and meet virtual friends and acquaintances from the Hepatitis C Forum. Several times I heard people exclaiming how they found people in reality different than their perceptions online.
Nick and Vicky paddled like mad to make the whole conference glide gracefully along. Their efforts were noted and appreciated. They have worked terribly hard and it paid off.
Michele took pictures of everyone.
Richard Irvin did some auricular acupuncture in his workshop, Martin Bolton talked about support groups, Ben Casperz very professionally worked the crowd in his workshop on working with the media. And HepCBoy revealed himself to be more than the sum of the parts of his online persona. Workshops were also run by Julian Winter and Sarah Cole (I think I’ve mentioned all the workshops)
And Janie showed she still has something to say on most things and does. And Gary looks well.
The conference was sponsored by Roche and Schering-Plough. As Ross thanked them in his closing comments I was aware that we have moved on these days to accepting the presence of the pharmaceutical companies without the hostility and suspicion we used to see in years gone by. They don’t try to influence the activities of the NHCN. But they too want to see the HepC community better organised - it’s in their interests too. It’s an alliance that seems to be working comfortably.
About 80 people showed up for this event but I’ll wager this number will increase next time around. NHCN is on the map.