The Network 16 and Network 18 Patient Newsletters for Fall 2020 have been posted to the Network websites, in both English and Spanish. They include articles on the Medicare Open Enrollment Period (which is open through December 7, 2020), Vocational Rehabilitation, and Dialysis Facility Compare, plus short notes on heart health and fluid management, filing a grievance, and (free) subscriptions to the Network Newsletters and blog. The Network 18 Newsletter also includes a short note on volunteering to help the Network improve patient care. Find the English and Spanish versions of the latest Newsletters at https://www.nwrn.org/patients-a-family/ptedres/quarterly-patient-newsletter.html for Network 16, and https://esrdnetwork18.org/patients/newsletters/ for Network 18.
In all of the resources below, remember that dialysis patients must still control their fluid intake. For tips on Dialysis Fluids Management in English, see https://s3-us-west-2.amazonaws.com/nwrn.org/files/NW18/Fluids.Eng.pdf and in Spanish, see https://s3-us-west-2.amazonaws.com/nwrn.org/files/NW18/Liquidos.esp.pdf. These should override the water-consumption suggestions in all of the documents below.
The Oregon Health Authority has an excellent web page on Extreme Heat, that includes FAQ sheets in English, Español (Spanish), Русский (Russian), 简体中文 (Simplified Chinese), Af Soomaali (Somali), and tiếng Việt (Vietnamese). Find it at https://www.oregon.gov/oha/ph/Preparedness/Prepare/Pages/PrepareForExtremeHeat.aspx.
Homeland Security’s “Ready.gov” website has a thorough discussion of how to stay cool and safe in extreme heat, at https://www.ready.gov/heat. The National Institute for Occupational Safety and Health (NIOSH) has a page on how to identify signs of heat exhaustion or heat stroke, and what to do about it, at http://www.cdc.gov/niosh/topics/heatstress/heatrelillness.html. CDC has a program that sends out a weekly email on Five Minutes or Less for Health Weekly Tip, which also covers skin cancer, hydration, and communicable diseases from mosquitoes and ticks. Review their hot weather Tips or sign up at https://www.cdc.gov/family/minutes/tips/summersavvy/index.htm.
The National Forum of ESRD Networks has published introductory guides to the Dialysis Facility Compare (DFC) internet application that compares facilities on their general characteristics (such as whether they offer home dialysis or stay open after 5 pm), their quality of care (such as how they compare to other facilities on infection control), and the experience of their patients (such as whether patients found their doctors to be caring and to communicate well).
The guides describe what, why, and how a patient might use DFC. Find them at:
Find DFC itself at https://www.medicare.gov/dialysisfacilitycompare/.
The International Society of Peritoneal Dialysis (ISPD) has released guidelines on Strategies Regarding COVID-19 in PD patients, in English, Spanish, Mandarin, French, Polish, Hungarian, Portuguese, and Japanese, which can all be found at https://ispd.org/strategies-covid19/.
The ESRD NCC has released the resource 11 Things You Can Do to Get Ready for Kidney Transplant During COVID-19. Find it at https://esrdncc.org/globalassets/covid-19/eleventhingstransplantcovid19508.pdf in English, and https://esrdncc.org/globalassets/covid-19/eleventhingstransplantcovidsp508.pdf in Spanish.
The CMS National Training Program includes a wide variety of webinars, slide decks, recorded videos, and CE offerings on a spectrum of Medicare-related topics. Browse their list of topics at https://cmsnationaltrainingprogram.cms.gov/browse-topics?q=browse-topics&name=E. One of their slide decks is called Medicare for People with ESRD, with sections on eligibility, enrollment, coverage, options, and additional resources. Find Medicare for People with ESRD at https://cmsnationaltrainingprogram.cms.gov/?combine=ESRD%20Networks&q=global-search.
ESRD Networks 16 and 18 have prepared their Summer 2020 patient newsletters. Major articles and sidebars for summer include:
- COVID-19: a New World for Dialysis Patients.
- Telehealth: How to connect virtually with your healthcare providers.
- Are you up to date on all your vaccines?
- How to Report Patient Grievances.
- How to Get Our Newsletter! and Join Our Blog!
- Introduction to The KidneyHub.org Mobile Tool (Network 16).
- Invitation to Get Involved! in helping the Network improve patient care (Network 18).
Find Network 16 patient newsletters, in English and Spanish, at https://nwrn.org/patients-a-family/ptedres/quarterly-patient-newsletter.html.
Find Network 18 patient newsletters, in English and Spanish, at http://www.esrdnetwork18.org/patients/newsletters/.
A number of organizations are hosting weekly webinars on COVID-19. These include:
- ESRD NCC half-hour “Quickinars” for providers and patients. Find more information, recordings of past Quickinars, and register for current presentations at https://esrdncc.org/quickinars:
- Tuesday May 26, 2020 patient Quickinar on Combating Uncertainty and Fear in the COVID-19 Era (En Español), presented by a PD patient, Network Ambassador, and patient and family engagement SME. She will share how Spanish-speaking patients are coping with fears surrounding COVID-19, and Provide links to COVID-19 information in Spanish.
- Wednesday May 27, 2020 provider Quickinar on COVID-19 Communication – Quick Tips to Connect, presented by the Director of Outreach and Development for the non-profit Academy of Communication in Healthcare, Editor-in-Chief for the Journal of Patient Experience, and Assistant Clinical Professor at Vanderbilt University School of Medicine.
- Coalition for Supportive Care of Kidney Patients half-hour of Open Discussion for Professional Providers Wednesday May 27, 2020 – see https://nwrnbulletins.wordpress.com/2020/04/01/4-1-weekly-staff-support-calls/.
- CMS Stakeholder Engagement Call for Dialysis Providers Wednesday May 27, 2020, call 833-614-0820, passcode 6152699, audio webcast link https://engage.vevent.com/index.jsp?eid=5779&seid=2123#/main/simplify.
- They also offer Tuesday May 26, 2020 “Office Hours” for general Medicare questions, and Lessons from the Front Lines on Friday May 29, 2020. For details, including recordings of past events, see https://nwrnbulletins.wordpress.com/2020/04/20/4-21-cms-shareholder-engagement-calls/.
- This week’s Wednesday May 27, 2020 Coalition for Compassionate Care of California hour-long COVID Conversations is dedicated to Skilled Nursing facilities; see https://mailchi.mp/coalitionccc.org/no-one-should-die-alone-on-the-street-746076?e=67e1ad4c31. For weekly details and registration, recordings of past events, and additional resources, see https://coalitionccc.org/covid-conversations-education/.
Networks 16 and 18 have assembled a web page on Healthcare Workers – Coping with Infectious Disease Outbreaks in the Dialysis Setting. In addition to guidance for maintaining your own health in situations of extreme stress, it includes links to the SAMHSA Disaster Distress Helpline (in English, Spanish, and 14 other languages) and their document on Taking Care of Your Behavioral Health: Tips for Social Distancing, Quarantine, and Isolation during an Infectious Disease Outbreak. Find the Network web page at http://www.esrdnetwork18.org/wp-content/uploads/20200313-Coping-with-ID-Outbreaks.pdf. While it’s aimed at facility staff, patients will also find it useful for managing their own stress.
March 12, 2020 is World Kidney Day, sponsored by the International Society of Nephrology and the International Federation of Kidney Foundations. This year’s theme is Kidney Health for Everyone Everywhere – from Prevention to Detection and Equitable Access to Care. Find more information at https://www.cdc.gov/mmwr/preview/mmwrhtml/mm5808a1.htm and a campaign toolkit at https://www.worldkidneyday.org/2020-campaign/2020-campaign-materials/.
March is also National Kidney Month, with the theme Take the Pressure off Your Kidneys and Your Health. Find more information at https://www.kidney.org/content/national-kidney-month and https://www.niddk.nih.gov/health-information/community-health-outreach/national-kidney-month. The latter includes a campaign toolkit, including posters like the one below, in English and Spanish.
To support National Kidney Month, NKF, HHS, and ASN have launched a nationwide risk campaign called Are You the 33%?. Find details at https://www.kidney.org/news/nationwide-kidney-risk-campaign-launched-nkf-hhs-and-asn.
To honor National Kidney Month (March), HHS, ASN, NKF, and private partners including CVS Kidney Care, have launched a nationwide campaign to reach the 33% of American adults who are at risk of kidney disease, and to help them avoid further development of the disease. Find more information at https://www.kidney.org/news/nationwide-kidney-risk-campaign-launched-nkf-hhs-and-asn. They plan to also launch a Spanish-language version on September 15, 2020 for National Hispanic Heritage Month (September 15-October 15).