Has anyone started a local LE advocacy & education campaign?

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carol57
carol57 Member Posts: 3,567
edited June 2014 in Lymphedema

Reading any one of these LE discussion topics demonstrates the affront that is the lack of information being disseminated about LE risks both pre- and post-surgery.  I had pre-surgery consults with 2 BS and 2 PS, and only one even mentioned LE risk, telling me that the SNB she was to perform would put me a minimal risk and not to worry.  That surgeon did my BMX and didn't even find it necessary to post BP and needle stick precautions on my (5 node) SNB side, post surgery.

This forum reports one astonishing experience after another, where we did things (or didn't) inadvisably, upping our LE risks, clueless for lack of information or advice. 

The NLN and Step-Up/Speak-Out advocacy and education groups are such a great resource. But how to translate those position papers, such as NLN's on how BC patients should be educated on risks and precautions, to live implementation? 

I'm so angry about being kept in the dark that I want to organize and administer a regional campaign to educate and disseminate LE information (credible information such as from NLN and SU-SO) to every relevant health-care provider and to all the BC survivor groups and chapters in our area. I want to pester the heck out of hospitals, surgical practices, oncology practices and others I haven't though of yet, to commit to putting those NLN guidelines into ironclad practice.

I have community foundation interest in supporting such an initiative and can find help to get things going. Is anyone aware of any similar, community-based effort? I'm looking for a model that will help prevent mis-steps and wasted time and effort. 

If you have seen such a campaign, heard of it, or participated in it, please share!

Carol

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  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2011

    Carol, a few of us from these boards started stepupspeakout to try and help Binney out, and it kind of just grew. We come from different backgrounds: a writer/editor, a master webmaster, medical research and it was complimentary.

    We did do a lot of outreach to researchers, and found them almost universally receptive.

    There is a divide that we've noticed, especially in the NLN, where patient voices are not appreciated, and we've had to walk that line carefully.

    We tried to be legitimate by supporting our comments with medical research.

    Now, the site needs updating, and we're working on it: the LE world doesn't stand still.

    You might want to contact Pat O'Connor of Lymohadema people who has been instrumental in starting and supporting the Lighthouse group in Georgia which is a model of support groups

    http://lighthouselymphedema.org/

    Because LE research isn't well funded, in general, a lot of the national groups get by on a wing and a prayer (there's no drug company money and the vendors are of LE supplies.)

    Hope that helps

    Kira

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  • carol57
    carol57 Member Posts: 3,567
    edited October 2011

    Thank you, Kira. I will follow up with Pat O'Connor.

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