What are consumer issues with regional training programs?

At this point there are a limited number of dialysis clinics that train patients to do home hemodialysis and even fewer offer daily or nocturnal home hemodialysis. Some people have suggested that regional training programs might make home hemodialysis available for more patients. What are your concerns about being trained to do home hemodialysis and being followed by a regional training center that may not even be in your state?

I think the biggest issue with going out of your area for home hemo training would have to be backing up. As an NKC patient in the NKC service area I have over a hundred stations available to back me up within 30 minutes of my house. I can imagine that in a rural area backup treatments would be an issue. For instance if I need a backup run I call one number and that person (who works for NKC) finds me a spot while trying to strike a balance between closeness of location and availability of a preferred time slot. I’m trying to imagine how I would set up a backup run if I lived out of area.

If there was just one provider with whom I could back up then I suppose I would have established a relationship but the availability of a slot could vary greatly and even if there was a machine available it could be a function of having staff available. I guess at some point your fail-safe backup would be a hospital but I am sure that would not be anyone’s first choice.

We are pretty much like the scenario you are talking about. Where we trained for nocturnal there are many patients who traveled more than 2 hrs. to get into the program. We being the greatest distance 5 hrs.

The only complaint I have is it’s a long trip to take every 4 to 6 weeks for follow up visits.

From the centers point of view… there biggest concern with far away treatments is the patient not getting timely medical attention. Suppose the access wouldn’t stop bleeding could I really afford to drive 5 hrs. Or suppose a backup treatment was needed that’s a long trip and an overnight stay if you make the drive and get the treatment.

There solution to the problem was for patients who travel over 2hrs to be in the program keep their original nephrologist so they can get medical attention and backup treatment in their home area.

What I don’t understand is why there can’t be regional training centers who train patient and take care of the home requirements and supplies and get paid for the dialysis treatments. And then have a home nephrologist who takes care of the patient and he gets paid.

The supplies could be shipped to the patient and the patient could eliminate the long drive back to the regional center each month by being followed by a nephrologist at home.

Our nephrologist in charge of the “nocturnal” program always says it’s a shame you have to drive this far when you see a nephrologist at home and you father is doing so well. BUT IT’S PART OF THE ESRD REGULATIONS You have to been seen by the nephrologist in charge of the home program.

I would look at getting the ESRD regulations changed to permit regional centers to do the training for home dialysis and taking care of equipment and supplies. Then let it be allowed the patient can be followed through his local nephrologist.

This would give the patient medical attention in their area, a center for backup and eliminate the long drives back to the training centers.

Marty is this a state regulation? Out here in Seattle I’ve never needed to see the Medical Director of the NKC home program (though I’m always happy when I cross Dr. Young’s path). NKC is different than some programs that I’ve heard about because Docs can get privileges without being exclusive to NKC. So in your situation your local doc could get privileges with the NKC home unit. The HDC data base ad for NKC does say “… Home hemodialysis patients are seen by NKC home dialysis staff in the clinic quarterly, and in their homes annually.” So you would have to make the trip in at lest four times a year. I must be about due for a home visit - do all programs have annual home visits?

Our staff is suppose to make home visits once a year. But I think they kind of slide on this unless a patient is having too many problems. The reason I don’t think they make this a high priority is because the personnel who do the quarterly service on our machine is hired by them and these people report back to them if the patients have a dirty environment or something is a miss.
I know when I put in a water softerner and Carbon Tank for the whole house they didn’t come down but asked the service personnel to check it out when they came.

I think the ESRD regulations say you have to be followed by the center offering the home hemo unless I misintrepreted what I read. I don’t know for sure if it is state law also but that is what the center tells me. I think maybe there are ways around the rules but no one has bothered to contact the state or whomever to get permission to change.

Beth, I would question rather or not regional centers are even needed? If patients could follow up with their home nephrologist why couldn’t patients train where ever home dialysis was offered? Any center having a home program could become a regional training center.

Although our nocturnal program isn’t considered to be a “regional” training center in reality it is one. Patients are in it from out of state as well as all over NY state. In fact when the program was 1st started all of the original patients were a distance away. It was the patients such as myself who had read about nocturnal and wanted to try it that contacted the center to get in.
It took a couple of years before the patients who actually went to that center to feel comfortable with the idea and start getting into the program.