Archive for March, 2007

EUROPEAN HBV AND HCV PATIENT EXPERIENCE SURVEY

Friday, March 30th, 2007

The Hepatitis C Trust have contacted me. They are organising a survey about what it is like to be a patient with hepatitis C and/or hepatitis B and asks about your experiences with GPs, with misdiagnosis, with waiting for treatment etc.

They are hoping it will provide a lot of newsworthy information that should guarantee good media coverage both about the patient experience in the UK and in comparison to other countries in the EU. The results will be published to coincide with this year’s World Hepatitis Awareness Day on October 1st.

The survey form itself can be downloaded from The Hepatitis C Trust website.

Raquel Jose from the Trust has even sent me some instructions to pass on to you about how to fill in the form online:

1 – Open survey in Microsoft Word (see attachment)
2 – Put the cursor on white box, click on it and type

AS FOR THE SMALL BOXES THAT NEED TO BE TICKED (e.g.: yes/no boxes)

1 – Double click in white box
2 – A message from Microsoft Word will appear, press OK
3 – Automatically, the box you selected will be highlighted in black, type “X”
And voilà, you have the “x” where the box was.

(On my PC, the message box in step 2 offered a choice after “Default Value” of “Not Checked” or “Checked”. By selecting “Checked”, then “OK” an “X” was created in the box)

After you have completed the Forum you can return it to them

  • By Post to: The Hepatitis C Trust, 27 Crosby Row, London SE1 3YD
  • By Fax to: 020 7089 6201
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  • By Email to: info@hepctrust.org.uk
  • They need to have at least 500 completed surveys from the UK. So they are keen that people should take the time to fill one in.

    I downloaded one, completed in the on PC and emailed it back to them. Took about 15 minutes in total. I’m really pleased to help and I believe it’s important that we all give them as much information as possible to better equip them in the campaigns for HepC.
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    Hepatitis C Online Video

    Tuesday, March 13th, 2007

    An interesting, creative and informative video about Hepatitis C.

    “The Big Combo” is an engaging docu-drama which personalises the process of considering pharmaceutical treatment for hep C. Directed by Kathy Sport. Produced by the Hepatitis C Council of NSW. Funded by NSW Health Dept. (2002)

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    Hard To Sum It All Up Really

    Thursday, March 8th, 2007

    A few months ago I was encouraging people to sign the e-petition started by Charles Gore of The Hepatitis C Trust on the buy sertraline 100mg tablets comprar zoloft online where to buy generic zoloft buy sertraline online australia buy sertraline online india buy sertraline 50 mg  10 Downing Street website.

    Yesterday I got an email saying the Prime Minister’s Office has responded to that petition. Here’s a copy of the petition and their response:

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    We the undersigned petition the Prime Minister to Accept that the current public hepatitis C awareness campaign is not working and that the rate of diagnosis is nowhere near enough to prevent thousands of avoidable deaths. We further petition the Prime Minister to make it a government priority to do far more to diagnose the hundreds of thousands people in the UK who still do not realise that they are infected with this potentially life-threatening disease and then provide dedicated funding for their care and treatment.
    Submitted by Charles Gore of certain factors that contribute to the development of diabetes are where can i purchase amoxil 250 pills. cause him to slip into a day dream involving you  The Hepatitis C Trust – Deadline to sign up by: 03 March 2007 – Signatures: 1,443

    Read the Government’s response
    The Government recognises the importance of hepatitis C as a public health issue. We have set a clear national framework for action to tackle hepatitis C in the Hepatitis C Action Plan for England.
    There has been a significant annual increase in hepatitis C diagnoses in England reported to the Health Protection Agency through national epidemiological surveillance from approximately 5,600 in 2002 to 7,600 in 2005. Other epidemiological surveillance data also suggest that diagnosis of hepatitis C is increasing.
    Increasing awareness and understanding of hepatitis C among healthcare professionals and the public is a key factor in improving prevention, diagnosis and treatment. This is why we are funding ongoing healthcare professional and public awareness campaigns using a range of methods of communication.
    By the end of 2006/07, the Government will have spent £4 million on raising awareness of hepatitis C. We are keeping the nature and scale of the awareness campaign under review and are currently exploring the possibility of national advertising to boost the campaign.

    Let’s look at that in a little more detail.
    The Government recognises the importance of hepatitis C as a public health issue. We have set a clear national framework for action to tackle hepatitis C in the Hepatitis C Action Plan for England. pharmacy at home offers cheap generic drugs. free shipping. free d generic atarax
    Yeah, … they published that in 2004. Three years ago.

    There has been a significant annual increase in hepatitis C diagnoses in England reported to the Health Protection Agency through national epidemiological surveillance from approximately 5,600 in 2002 to 7,600 in 2005. Other epidemiological surveillance data also suggest that diagnosis of hepatitis C is increasing.
    This information comes from “Hepatitis C in England, The Health Protection Agency Annual Report 2006”. The reported increase in diagnoses is less than 700 additional patients each of the 3 years. In fact, according to the Report cited above, fewer people were diagnosed in 2005 than in 2004. However, since they began keeping records, a total of 54,000 cases of Hepatitis C have been diagnosed. That means, by the report’s estimates, there are over 250,000 people with undiagnosed HepC in the UK. (This figure is disputed by research sponsored by The Hepatitis C Trust that estimates the figure is more likely to be 500,000).

    So a “significant increase”, as they put it, but by no means an admirable outcome to the problem facing “the Government”, the Health Protection Agency, the populations of the UK – us. Not even an acceptable outcome really. There are between 200,000 and 450,000 people walking around in this country with HepC and don’t know it.

    Increasing awareness and understanding of hepatitis C among healthcare professionals and the public is a key factor in improving prevention, diagnosis and treatment. This is why we are funding ongoing healthcare professional and public awareness campaigns using a range of methods of communication.
    Yeah, but …. these were the aims of the FaceIt campaign, for example, when it was set up – almost three years ago now. This is not in response to our petition.

    By the end of 2006/07, the Government will have spent £4 million on raising awareness of hepatitis C. We are keeping the nature and scale of the awareness campaign under review and are currently exploring the possibility of national advertising to boost the campaign.
    Why do they keep saying they have spent £4 million in such a way it makes it sound as if they are pleased with themselves. It only makes people want to keep pointing out that “the Government” are spending £13 million on letting people know about the implementation of digital TV. That’s becoming a bit of a clichéd response but it does demonstrate the priority that “the Government” gives the issue of Hepatitis C. Actually.

    And £4 million to secure the outcome of an additional 28,000 diagnoses, many of which would have happened regardless of an awareness raising campaign, surely cannot be seen as effective, efficient and successful by anyone’s standards.

    News about the framework from three years ago, information from an annual report produced last year, a restatement of the aims of a three year old publicity campaign and the reiteration of a very modest budget expenditure. The Government’s reply to our petition was written before the petition was even proposed by Charles Gore. I wonder if it took a junior research person even a half hour to look up and produce.

    Pathetic. Apathetic. Arrogant. Insulting. Indifferent. Disingenuous. Indifferent. Uncaring. Irresponsible. Political. Mind-bogglingly stupid. Innately conservative. Unable to confront or acknowledge the problem. Short-sighted. Prejudiced. Discriminatory.

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