ESRD Patient Stakeholders meeting

Discussions for Patients, Family, and Friends HD and PD Care Partners (all home dialysis)
1

Hi y’all,

Medicare only gave about 2 weeks notice of a meeting in Baltimore (9/4) about the ESRD Networks for patients & patient advocates.

If you live in the Baltimore area and want to go to this meeting, you can register by checking out the info on this page: http://www.esrdncc.org. (Click the link for 8/28 meetings).

If you don’t live in the Baltimore area and can’t go–as I suspect most folks can’t, I’m going, and I’d love to hear from you. The agenda has these questions:
1. What characteristics would your ideal dialysis facility have?
2. What challenges to patients face at the dialysis facility?
3. How can ESRD Networks reduce disparities of care among minorities
and ethnic groups?
4. What patient experiences will best optimize ESRD patient care,
treatment, and options?
5. How can the Networks best support facilities to help patients who
have trouble following their treatment plans?

I’ll make a list of answers I get from y’all, so please tell me what to share with Medicare on your behalf.

Dori

2

May be way to late for this however,
HD centers need to have TRAINED professionals! It is unbelievable the amt of workers in facilities that do not know what they are doing! They are unable to stick fistulas appro. therefore leading to a permcath placement…leading to risk for infection for the pt, overall horrible pt care!
Like most heathcare jobs, there is a huge need and short staffness plays a major role, however there is no sense in people with illnessess having to suffer more!
I am also having the time of my life getting my fiancee transfered to another facility in the area d/t us moving! It has been unreal and still NOTHING! I do not understand how others with Case Management involved having the ability to be transfered however I am on a waiting list and STILL wont be able to go