What's your experience with the NLN?

I think their stated mission is wonderful, and their position papers at least wade through some of the bunk that is 'out there' about LE, providing evidence-based guidelines. Having said that, I do agree with Kira that some of the positions have weak foundations. My own example is the exercise position paper, which endorses body-weight exercises. That flies in the face of the PAL Protocol, which is the most comprehensive study of weight training and LE. I'm not sure how they can ignore that solid research evidence. 

There is a need for high quality, patient-friendly LE risk/symptom surveillance/diagnosis criteria/treatment methods materials, and the NLN position papers fall well short of meeting that need.

I suspect that a lot of LE patients do not know the NLN exists.  Like Binney, I'd be curious to know how many of us in this forum have ever visited their website, and what ways they find the NLN to be helpful.

I am a member, although in truth I'm not sure of what that gets me.  I don't mind supporting 'our' organization and hope it grows stronger and more patient-responsive over time.

Carol

Thx carol. I'll be seeing my LEist in a couple of days so I'm going to ask her what our connections are if any. She does a lot of travelling about both nationally and further afield to do with LE.

Binney, I have been an NLN member since 2006 when my LE therapist told me of its existence. I attended the NLN conference in Nashville that year with my therapist. I was able to register due to my RN status, but as a LE patient only, I would not have been eligible to attend. I found that first conference eye-opening from the viewpoint of a newly diagnosed LE patient. I was amazed to learn that LE was a subject that could bring together researchers, scientists, clinicians and practitioners from all over the world. The exhibit hall with numerous vendors for LE products and related assistive devices was like a wonderful candy store, showing me ways to make living with LE easier. I left that conference feeling energized and hopeful for the future, knowing I was not in this battle alone.



My NLN Membership gave me access to the archives where I read numerous articles from previous years of the Lymphlink newsletter. I downloaded the position papers and shared them with patients at our LE support group monthly meetings. I appreciated having this resource to share with other patients.



I learned about the Marilyn Westbrook Garment Fund and often informed patients and therapists of its existence. Because our support group was not initially sponsored by an institution, I was allowed to have our group information, meeting time and place listed in the Lymphlinks publication at no charge.



Here, however, is where I began to feel that the NLN was not as sensitive to patient's needs as they should or could be. I understand the need for funding to keep their organization viable, but I feel they are going about it in the wrong way.



I find some of their fee based policies too rigid and a deterrent to improving patient access to LE services. Examples:



1. In order for a patient to be assisted by the Westbrook Garment Fund, they must themselves be a paid member of the NLN ($50) and their referring therapist or referring clinic must be a paid member (either $75 for the therapist or $150 for the institution)



2. I assume LE patients are still not allowed to attend the international conferences unless they also have a professional connection to LE services? Has that changed? I really believe most patients would benefit from the exhibit hall alone and many would love to attend the Conference sessions. Patients could pay a minimal entry fee to the exhibit hall. A discounted rate could be charged for individual class sessions as opposed to the $500+ charge for professional attendees who also earn CME credits. There used to be separate LE patient conferences run by the Lighthouse group but I have not heard of any the last few years. Maybe I just missed it?



3. I think the registration payment process for the international conference is somewhat objectionable when registrants are told there will be no refunds available of their $500+ fee after a certain date, which is usually at least 4 months before the conference. I know I am unable to predict 4 months in advance what events might occur making it impossible for me to attend the conference, but if I want to guarantee a space in specific class sessions I must be willing to risk losing my total fee? Plus, why are they choosing to hold the convention in luxury hotels which are charging $175-200 a night room rates even at the conference discount? Very nice facilities yes, but does the cost not limit even professionals who would like to attend?



4. Once our support group came under the sponsorship of a local medical center, the NLN rules would no longer allow our meeting information to be listed in the Lymphlink newsletter or online in the listing of support groups without institutional membership fees being paid. I have repeatedly encouraged the sponsor to join the NLN for that purpose but I no longer have control over that situation. The listing of LE clinics, therapists and support groups on the NLN website is "affiliated" groups only, meaning they have paid their NLN dues.



I have every intention of remaining a NLN member at this time because I do believe they provide a valuable service with their resource information and if only to draw national attention to LE. I believe also, however, that their service provided directly to patients seems less than it could be and comes with strings attached. I would like to see a more patient friendly approach.

Linda, the Lighthouse group does indeed still put on patient confernences.  There was one in October, I believe, in Atlanta.  BeckySharp attended, so perhaps she will comment about that experience. 

Currently it is possible to attend the NLN conference as a patient, but only after applying for and being accepted as a participant in the Lymph Science Advocacy Program, or LSAP.  LSAP particpants pay a slightly reduced fee--it was $450 this year, plus another $150 I think, to register for mandatory (to LSAP) pre-conference sessions. Of course, we also paid for the luxury hotel.  Becky and I shared a room to economize. 

As an LSAP participant, you are expected to be doing some serious LE advocacy work, and that is the gist of the application process--explaining your interests and your projects.  The LSAP experience was a wonderful one for me, for many of the reasons you outlined in your post. I made some invaluable contacts there that continue to help me with my LE projects. I am surprised, however, that there is no NLN support for our advocacy projects, and I don't mean financial support--networking alone would be wonderful. After the application process, there has been no seeming interest in my projects (patient and nurse education), and I am not aware of anyone else in the LSAP group receiving any help from what I thought we might view as the 'mother ship.' 

Recently the NLN did establish a Yahoo online forum for LSAP graduates, hoping I think to recruit our enthusiasm and time to eventually support some NLN initiatives.  But after several months, there has yet to be any meaningful activity in the forum, despite our moderator's efforts.  And I think that is because none of the LSAP participants feels particularly tied to the NLN, and because there is no sense of group, or of group support for shared advocacy goals. Some of these folks are doing amazing LE advocacy work, but it's not because of NLN affiliation, sadly.  I think it all boils down to a shared feeling that as 'only' LE patients, we are not really part of NLN's vision for the direction of the organization and what it might accomplish. 

Having said all of that, I remind myself that the NLN is a very small organization that has accomplished some amazing progress in centralizing research focus on LE; and for all their shortcomings, the position papers have become 'the' standard of care guidelines, and that in itself is a wonderful outcome. Saskia Thiadens works tirelessly, and as largely a one-woman organization, the NLN has become central point of LE focus under her guidance. I just wish that the patient population identified more, and that there were more patient benefits to joining. Patients could help push NLN information into the hands of our healthcare providers, and patients would also be much more amenable to donating or participating in fundraising efforts, if there was perceived value in return.

Another concern: the NLN is often the only reference on LE provided on "official" websites, like the ACS. And most patients will not find patient friendly information that they can use to guide them with risk reduction and finding therapy.