Friends of HDC: Open Letter

Dear friend and user of HDC …

I and my colleagues on the HDC ‘experts’ panel have been providing answers to your questions at this site for >18 months.

While I have found it has been a pleasure and privelege to do so, I am also concerned that too few are able to take (or have taken) advantage of the help we try to give and the knowledge and understanding we try to pass on.

I think the same applies to all the other ‘information sites’ that are out there in cyberspace - many of which are both excellent and informative - all ready to help, yet reaching only a tiny fraction of those who might benefit - those who are Internet savvy and who are prepared to use the Internet to ‘grow’ their understanding.

The vast majority of dialysis patients, their friends and their families, remain unaware that there is information and help available … if they but knew where and how to seek it.

The Internet, for many, is a scary place - and it certainly can be. There is no question that Internet information can be patchy, misguided, or poorly delivered. While I think the track-record of HDC, over many years now, has been strong and speaks for itself, only you can judge that.

Although many dialysis doctors and services work very hard to ensure that their patients get a good grounding in the principles of their care, some patients (perhaps many) still miss out … or are too fearful of asking the questions they want to ask, but are too uncertain to ask.

The anonymity of web-based Q&A pages like the ones offered here by HDC can be particularly helpful to those with a burning question, yet who may be too fearful of asking, in person, of their treating team.

So … to those of you who have used these facilities to seek answers and especially to those of you who have found help here, I would ask that you consider ways by which you could act as ambassadors for the site.

You may consider ways to ‘give back’, ways through which you could create a ‘reach-out strategy’ … acting for those you may know in the dialysis world who do not know how to use the web or how to ask a question … acting as a ‘web-buddy’ for those less Internet-certain than yourselves.

While I seriously shudder at the thought of the added work this might involve for the panel, we chose to be involved in this site because we actually want to make a difference … but, making a difference is only possible if we are able to reach out to those who need help the most … those with no voice and no access.

If you are reading this, you are already one of the few who have used your voice, who have gained access.

But … it is to those that you may know who have not had the same opportunities ou have had that this post is directed. I would encourage you to consider ways by which you might involve others less ‘Internet brave’ to advance their knowledge and understanding.

Renal professionals tend to make chronic kidney disease and dialysis seem complex and difficult, but it does not need to be so. Chronic kidney disease and dialysis can be demystified. Sites like this - and the many other excellent reference sites now available - can perform that role. I encourage you to help us help others as, hopefully, we have helped you.

John Agar

I am a pretty frequent visitor to the “I Hate Dialysis” website. If you are not familiar with that site (there is a good contingent of Aussies who post frequently), you may be shocked to know that I’ve observed more and more newly diagnosed patients and their caregivers joining the community. They are just beginning to find their feet in the bewildering world that is dialysis, and I frequently direct them to HDC. I realize that these are people who do have internet access, although a surprising number of them claim that they have never posted on a website before, so they are newbies in many senses of that word.

I don’t know any real-life dialysis patients, although that will certainly change once I start myself. I definintely intend to direct people to this site as it has proven to be crucial to my own understanding of renal disease and dialysis.

Thank you for the reminder.

I will love to spread the word as well…

I had my cardiac testing today, and it so happened that across the street from the heart clinic is the dialysis clinic where I will be doing my NxStage training when the time comes. I had a bit of spare time, so I popped in and was fortunate enough to get to talk to the social worker. I told him I was planning on doing home hemo, blah blah blah, and he said he was delighted to meet such a pro-active patient. And THEN he told me to check out Home Dialysis Central! I explained that I was a frequent visitor to that site already. I just wanted to let you know that your message IS getting through.

how neat was that. It would have to build your confidence a bit in the facility as well :slight_smile: Was there anyone ‘in’ training at the time? I love when we go for our monthly’s and theirs someone in training. Im normally quite to myself but for some reason, the blab comes out in me at that time. A real promoter i’d say :wink: Hope you felt good about the place and im glad your familiarizing yourself so it will be old hat when ya get there. Hope all went well with your cardiac testing as well.

That’s great to hear, Moosemom! Beth, especially, spends a lot of time getting social workers up to speed on home treatments and reminding them about the site. It’s awesome to know that the message is being heard. :smiley:

boswife, the home D trainer wasn’t in at the time I dropped by. I wasn’t really expecting to get to talk to anyone; I just thought that the receptionist could give me some pamphlets or something, so I was pleasantly surprised to be able to talk to the social worker. He spend quite a bit of time with me and was really nice. I was very glad to hear him talking about the health advantages of home hemo, ie avoiding the highs and lows of inclinic D, especially over the weekend. I thought to myself, “Oooh, I know lots of people who would be really happy to hear the SW speak in such terms!”

He gave me all the pamphlets, etc, and I was amused to discover that I already knew all the info they contained. I’m just sooo smart! haha Well, that’s thanks to HDC.

Great news … and thanks!

Keep up the great PR … Every word counts!