Archive for February, 2009

New Kids On The Block

Monday, February 9th, 2009

Been surfing some HepC and patient sites today – checking what’s happening on the web. What kind of sites are in the running for giving people with HepC the opportunities to learn and share?

I was emailed this week by Matt Jameson Evans from nhsUnlocked buy prednisone online for dogs. sep 25, 2014 – we give you the finest drugs with prednisolone no prescription required, cats dogs buy canada tablets uk for  to say they had linked to this blog so I wanted to check out their site. nhsUnlocked buy female viagra Purchase . no prescription, approved pharmacy. good quality and is the brain-child of two NHS hospital doctors – Chris McCullough and Matt Jameson Evans, the founders of the not-for-profit doctors pressure group, Buy .?
They say

We want to expose the postcode lottery and by getting patients who are really motivated, we hope to do this. This is the only way we can bring pressure to bear on the government and the people who run the health service. We need good hard facts and by getting people to record all the data online we can present it to the people in control in a clear fashion.

The site is organized around illness Groups, for example Progressive Supranuclear Palsy, Chronic Back Pain, Maternity. Amongst these Groups, the site features the Hepatitis C Trust Group. Why Hepatitis C is not a generic group like other health areas, but a Hepatitis C Trust Group, is not immediately apparent. Maybe the Trust presents as a pre-formed group already pressuring the government? Or a ready source of hard facts and people to record data on HepC. Whereas the other “illness areas” may not already be so organised.

But, hey guys, thanks for the link to this blog. I’ll be interested to see where it goes and how it develops.

Checking their other links led me to having a view of the Forums. Not done that for a long, long time.

It was about a year and a half ago I fell out of the forum I established in 2005 while I was on treatment. I see the Boltons are still running it. Single-handedly it looks like, as Carol seems to be the only moderator. They changed the name, when I handed it over to them, to The UK Hepatitis C Forum.

Their site says they have 1071 registered users and 113344 articles – so that is over the four years it’s been open. Traffic seems to have peaked in Oct 2008 with 15,000 visits per month dwindling down to 446 visits in the month of January 2009 (according to stats generated by Webalizer Version2.01). Not sure what’s about. When I visited there were no members online and I was the only Guest.

order name brand paxil no rx HepCFriends how much does zoloft cost with insurance zoloft tablet price in pakistan cheap Sertraline is a forum set up about one and half years ago by several people who moved away from the UK Hepatitis C Forum. Their front page says they have 216 Registered Members and Total Posts of 11,605. Not bad for the length of time online. And a friendly forum it appears to be.

online canadian pharmacy store! walgreens zoloft price . top offering, generic zoloft nausea. HepC Nomads is the most recently set up board. Their front page says they have 683 members and Total posts of 71,874. However, no more information from their front page. You have to join to see anything else.

My experience of running a forum is that many people with HepC “lurk” for a long time, reading the forums and posts before deciding whether they will “commit” to identifying themselves with a forum. Lots of people just read and never do join. So it’s a shame they can’t see what’s on offer here. And a puzzle to me that it’s a closed club.

I also checked some of the US Forums and still think their layouts are hard to follow – so the UK based forums have the upper hand here.

But I find myself wondering if Forums are still meeting the need. Certainly there is a lot of in-fighting amongst members that interferes and takes away from the experience for a number of people. And splits communities too.

I sense that new developments in social media, the new types of online communities such as Facebook where to buy prozac online next day delivery ? re-order prozac and get %5 discount. sales of cheap prozac at next day online pharmacy – overnight shipping and MySpace, are beginning to impact on the way we think about social connections via the internet. Developments like Skype, vlogging on sites like YouTube and Twitter are influencing us to connect with each other in new ways. They will also influence what we look for and how we make contact with others from our patient communities. Online communities will still be about sharing and support but in different formats.

There are new types of online patient communities already growing, carrying an emphasis different than the forums, a different type of support. nhsUnlocked is one of these. And so too is Patients Like Me whose aim is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, they have created a platform for collecting and sharing real world, outcome-based patient data and then establish data-sharing partnerships with doctors, pharmaceutical and medical device companies, research and non-profit organizations.

Below is a video report (sorry about the ad) from CBS News about Patients Like Me

The focus remains on treatment and outcomes. But community and mutual sharing and support are still strong components.

Hepatitis C blogs like this one are dwindling. Checking the sites on my blogroll I see many are now cobwebsites. People who have completed or abandoned treatment have ended their blogs or sometimes just left them hanging.

Some bloggers, however are expanding and developing. There is a French blog for MS that has video interviews, videos from friends and other members, sells T-shirts in support of the MS societe, features news and views. A lively community feel.

As well needing to update my blogroll it makes me think what is next for here, what is next for me to do? Last year I needed to move on and make some transitions away from Hepatitis C. I also reached the point where I needed to return to professional work. I needed an income and I needed to stop being a patient.

What I have learned during that transition is that, while I do not live with the HepC virus any more, I do live “without HepC”. HepC hasn’t totally gone out of my life. I still think about it. My liver still hurts, I am careful about the small amounts of alcohol I take, I still wonder if I should have blood tests, an annual HepC test and whether I should track my Liver Functions. I still regularly get emails from people asking for advice and help dealing with HepC.

Well this ramble today about online developments in patient support is leading me to thinking. And to consider starting to look for a new HepC project to get involved with.

Any ideas or suggestions gratefully received. 🙂

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Staying Positive

Monday, February 2nd, 2009

Today I came across the draft of a short article from a series I wrote for Roche pharmaceuticals two years ago to include in their newlsetters to patients on treatment.

It stood out for me because I recently replied to an email from someone whose partner is struggling with keeping up the treatment.

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It is so important to keep a positive outlook to achieve any successful outcome in life. And that applies to going through treatment as well.

Not long into treatment I noticed I was having trouble keeping pace with everyone else in my family as we walked along the street – I was short of breath while walking.

When I complained to my wife that my pace had slowed everybody else down she pointed out that not everyone who had injected interferon that day would have been able to participate in a family get-together, travel into central London and go out for a meal in a restaurant – “so you are fortunate to have done this much”. There – my complaint positively re-framed!

On treatment I found it was essential to see the positives, otherwise I could slip into a downward spiral to depression and the need for more medications. Regularly picking up on these small instances helped me to, well, re-frame my perspective and keep up the positive attitude necessary to support this treatment. It would be so easy to slip into feeling “sorry for myself” and next into being a “professionally ill person” or an invalid. I think after that comes “victim” mentality. Then probably a depression.

To help me over the long haul of 48 weeks I went to see a counsellor therapist. A professional who helped me stand back and look at each week, to see the positives; who monitored for any depression; who helped me feel on top of the challenges that living inside a treatment regime brought.

Ask your GP or Clinic Nurse about counsellor therapist resources to help support you if you are really struggling.

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