Archive for April, 2007

National Hepatitis C Network Conference 14/15 April

Monday, April 16th, 2007

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 order fluoxetine 20 mg, 10 mg without prescription browse an az list of brand insufficient eu analgesics and two-thirds phosphors, order cheap fluoxetine . , 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 find where to buy atarax pills online – how to purchase your atarax medication – best on-line drugstores – trustworthy and reliable stores. purchase atarax experience speeds up salaries for pharmacists whether they stay with exactly the same employer or not. want to buy estrace cream online medicine fast delivery  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 online meds rx deltasone, deltasone without prescription us pharmacy, deltasone online pharmacies worldwide delivery, prednisone 40 mg purchase canada ,  . 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.

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Awareness Raising Is Working: Part 2

Wednesday, April 11th, 2007

tags: baclofen visas. baclofen generic equalivalent baclofen same day delivery baclofen online overnight delivery cod order baclofen cod next day delivery Just been to buy some new tyres for the car. The guy behind the counter was sporting a veritable array of tattoo’s all over the shop. I couldn’t resist asking – with all those tattoos have you worried about the risk of HepC?

Immediate clear reply – I only get them done by people I know and feel safe with, always watch the new needles come out of the pack, make sure the guy has sterilised the equipment and changed the ink.

So you know about Hepatitis C? Yeah, several friends have talked about it and warned me.

Awareness raising is working.

Awareness Raising Is Working

Sunday, April 8th, 2007

From the Sunday Times today, an article saying that a stint in rehab has become a rite of passage for celebs wanting to escape the spotlight. Sarah Benjamin writes:

Rehab, I discovered, comes with it own complicated caste system. Your drug of choice defines who you are and which gang you hang out with. The alcoholics look down on the drug users and vice versa. The cocaine crowd think they are superior to the heroin users (more glamorous) while the heroin addicts scorn the coke-head as light weights. Near the bottom of the food chain is the confused housewife who has been abusing her prescription drugs, and even lower than that comes the unfortunate “foodie”.

There is even one-upmanship about dec 20, 2014 – expensive estrace cream *** estrace-cream 15gm – great discounts *** *** buy estrace – cream online – click here *** tablets estrace-cream  what strain of hepatitis C addicts are infected with: genotype 1 has the worst prognosis, so confers greater status of suffering.

So we are now beginning to see references to Hepatitis C in articles in the mainstream press.

With the “coming out” of Anita Roddick on the subject a few weeks ago and the stepping up of the Face-It Campaign – there are radio commercials on Virgin Radio daily now, the HepC profile is really being raised.

More people are showing up on the Forum and joining – the numbers are increasing month on month.

Awareness raising is working.

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Me & The Hepatitis C Forum

Wednesday, April 4th, 2007

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.

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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.

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