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Patient & Community

book with glasses on top imageThe ESRD Network of New England offers ESRD orientation and educational materials at no cost to patients, patients' family members, pre-ESRD patients and caregivers. Any educational item from the list below can be downloaded and printed on most PCs. Many items can also be requested singly or in larger quantity by e-mail, phone, or mail. If you are seeking educational information about an ESRD-related topic not listed, please contact the Network with your specific need, and a customized search can be conducted.

To order resource materials, please fill out the provider or patient order forms.

To better serve the renal community, we kindly ask that a feedback form be completed and faxed back to 203-389-9902 if materials have been requested and received from the Network of New England. Thank you.


Patient Resources

Your New Life   A guide for patients and patient’s families faced with Chronic Kidney Disease (CKD) or End Stage Renal Disease (ESRD).
     
Su Nueva Vida   Spanish translated version of Your New Life.
     
"Bee" Informed About Your Rights and Responsibilities   Patient Advisory Committee (PAC) developed brochure, with input from the new Conditions for Coverage, that lists rights and responsibilities of patients, while also describing the Network grievance policy.
     
Preparing for Emergencies   A patients guide of what to do prior to and during an emergency situation.
     
You Can Live   CMS booklet that booklet gives tips on treating kidney failure, making treatments better and living a healthier lifestyle
     
Employment: A Kidney Patients Guide to Working & Paying for Treatment   A brochure developed by Life Options Rehabilitation Program, supported by the End Stage Renal Disease Networks and administered by the MEI Institute. This document can be found on the Network website under Patient Services and Community.
     
NKF Coffee House Conversations™   Conference calls to empower and educate individuals affected by chronic kidney disease, transplantation and donation.
     
Five Wishes   A living will that talks about personal, spiritual and emotional needs as well as medical wishes. This document is available on the Network website.
     
Medicare Entitlement Update   This brochure attempts to clarify misconceptions regarding Medicare coverage and to answer several commonly asked questions. The Network receives many questions from dialysis personnel, patients and plan administrators regarding Medicare coverage. This publication may be useful to these individuals as well as others interested in entitlement issues.


Professional Resources

Improving Communication Tips   Dr. Mark Pettus, a New England Nephrologist and the son of two dialysis patients; developed the helpful communication tool entitled "Momentum Turning Questions". These questions are specifically designed for use in the dialysis setting to enhance conversations between patients, families and all members of the therapeutic team. Think of these questions as suggested ways to approach all types of communication - from the everyday to the most difficult.
     
Emergency Preparedness for Dialysis Facilities   A guide for chronic hemodialysis facilities providing a brief overview of the principles of emergency management: Mitigation, Preparedness, Response and Recovery.
     
Requirements for Approval of Transplant Centers   CMS hospital Requirements for the approval and re-approval of transplant centers to perform organ transplants.
     
Keep Kidney Patients Safe   A website administered by the Renal Physicians Association and the Forum of End Stage Renal Disease that serves as a resource for nephrology professionals who are committed to achieving and maintaining optimum levels of kidney patient safety. This website provides information and best practices to prevent the occurrence of the Five Adverse Patient Safety Events as identified by patient and professional surveys and also assists nephrology professionals in meeting the quality assessment and performance improvement (QAPI) requirements outlined in the Centers for Medicare and Medicaid Services (CMS) Conditions for Coverage for End Stage Renal Disease Facilities.
     
Be Aware Be Safe Poster   A poster created by the Patient Advisory Committee (PAC) that gives tips on awareness and safety on medications, access, diet and advocacy.


Do You Have a Concern?

(Network grievance notification card to hang in facility)

Connecticut
Spanish
Maine
Massachusetts
New Hampshire
Rhode Island
Vermont


Conditions for Coverage

Patient Rights   A poster that states patients rights according to the Conditions for Coverage.
     
Patient Responsibilities   A poster stating patient responsibilities, which were taken from various sources and modified by the Network. One of the sources the responsibilities originated from is the Conditions for Coverage V464 (13).


Coordination of Benefits
Timeline (2009-2013)

Incenter Hemodialysis Patients   Table illustrating Medicare Part B coverage for incenter hemodialysis patients
     
Transplant and Self-Care Patients   Table illustrating Medicare Part B coverage for transplant & self-care (peritoneal and home hemodialysis) patients


Decreasing Dialysis Patient-Provider Conflict (DPC) Toolkit

The DPC toolkit, which is funded by the Centers for Medicare & Medicaid Services (CMS), is a coordinated, national effort by the ESRD community about conflict in dialysis facilities. The toolkit provides resources to understand, educate, and cope with conflict. Some of the goals of DPC are to create safe dialysis facilities, to increase awareness of conflict and improve skills to decrease conflict, to improve patient-staff relationships, and to create common language to describe conflict. The DPC toolkit, using the Conflict Model, follows these steps:

• Create a calm environment
• Openness in understanding others
• Need a Nonjudgmental approach
• Focus on the issue at hand
• Look for solutions
• Implement agreement
• Continue communication
• Take another look at the situation.

For more detailed information on DPC toolkit and the conflict model, please see the DPC brochure.

The DPC toolkit is important because it fosters an improved patient-staff working relationship; it prevents escalation of conflict to maintain a safe workplace and provides skills to intervene successfully in a conflict. The toolkit also improves employee morale, and increases employee and patient satisfaction with the dialysis experience.

Each unit, and each new unit, is sent a DPC toolkit. To order a toolkit for your facility, please contact the Patient Services Coordinator, Amber Maneca, at 203-387-9332, amaneca@nw1.esrd.net, or fax the order form to 203-389-9902. Thank you for doing your part to help in decreasing patient provider conflict.


Immunizations

Adult Immunizations   The summary of information presented in this brochure is intended for Medicare fee-for-service physicians, providers, suppliers, and other health care professionals who furnish or provide referrals for and/or file claims for the Medicare-covered preventive benefits discussed in this brochure.


Medicare

ESRD Medicare Booklet   If you have permanent kidney failure, this official government booklet explains the basics of Medicare, how Medicare helps pay for kidney dialysis and kidney transplants, and where to get help.
     
2010 Prescription Drug and Health Plan Options   Enhanced online tools make comparing Medicare's 2010 Prescription Drug and Health Plan options easier. The Centers for Medicare & Medicaid Services (CMS) announced that people with Medicare and family members can begin to review their 2010 coverage options through Medicare's improved online tools.
     
2010 Medicare Premiums, Deductibles, and Co-payments   Applies to Original Medicare Plan (Medicare Fee-for-Service).
Co-payment: fixed dollar amount after annual deductible is met.
Coinsurance: % of Medicare approved amount after annual deductible is met.
     
2010 QMB, SLMB, and QI Programs   The Qualified Medicare Beneficiary (QMB), Specified Low-Income Medicare Beneficiary (SLMB) and Qualifying Individual (QI) programs are federal Medicare Savings Programs (MSPs) which help low income elders and younger Medicare beneficiaries access Medicare benefits.
     

Changes in the Law Starting January 2010 Make it Easier to Save on Medicare Drug Plan Costs

En Español

  Beginning January 1, 2010, changes in the law, under the Medicare Improvements for Patients and Providers Act, will make it easier for some people to qualify for Extra Help with their Medicare prescription drug plan costs. Click here to see how in English and Spanish. Get some of your questions about the new law answered here.
     

Q&A MIPPA

  Questions & Answers for the Medicare Improvements for Patients and Providers Act.


Medicare Part B

CMS Medicare Premiums and Deductibles for 2010   Informative facts about the Medicare Part B program.
     
H.R. 3631 - Medicare Premium Fairness Act   Facts sheet about protection for all seniors from Medicare Part B premium increases. The House passes H.R. 3631, . but the Senate has not.


Medicare Part D

Quick Facts Part D   Informative facts about the Medicare Part D program.
     
Quick Facts Part D How To Join   An explanation of the ways and times in which a person can enroll in Medicare Part D.
     
Quick Facts Part D with Medicare & Medicaid   An explanation of basic facts for patients who have both Medicare and Medicaid.
     
Medicare Part D Prescription Drug Plan complaints (i.e., grievances)   See the process CMS recommends if the beneficiary has not yet made a
complaint, or if he or she has made a complaint and a reasonable amount of time has passed without resolution, or if the beneficiary has a dire or urgent need.

Treatment Options

When Stopping Dialysis Treatment Is Your Choice: A Guide for Patients and their Families   National Kidney Foundation brochure about choices patients have when they consider stopping dialysis.
     
Kidney Failure: Choosing a Treatment That’s Right for You   Web resource describing treatment options available to ESRD patients. The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health.
     
Kidney Options   Fresenius Medical Care North America supported website describing treatment options available to ESRD patients.


Transplantation

Transplantation - Treatment Methods for Kidney Failure   National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) manual explaining transplantation.
     

Partnering With Your
Transplant Team

En Español

  U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA) Patient Guide to Transplantation.
     
Transplant Living   A web site created by UNOS focusing on before, during, and after the transplant process. Also has a section on pediatric transplantation.
     
American Society of Transplantation (AST)   This site has educational brochures available in both English and Spanish, as well as other information regarding transplants.
     
UNOS   United Network for Organ Sharing (UNOS) has transplant data as well as educational info for both patients and professionals. The Organ Center tracks and facilitates organ transplantation 24 hours a day, and the UNOS website provides a running tally of the number of waiting list candidates and transplants performed in the United States at any given time.


Transplant Centers in New England

Connecticut

HARTFORD HOSPITAL - TRANSPLANT
Hartford Hospital Transplant Program
P.O.Box 5037
80 Seymour Street
Hartford, CT 06102-5037
Phone: 860-545-4219
Fax: 860-545-4328

YALE NEW HAVEN ORGAN TRANSPLANT CTR., DEPARTMENT OF SURGERY
Transplant & Immunology Section
PO BOX 208062
333 Cedar Street
New Haven, CT 06520-8062
Phone: 203-785-2565
F ax: 203-785-7162

Maine
MAINE MEDICAL CENTER -TRANSPLANT
Maine Transplant Program
19 West Street
Portland, ME 04102
Phone: 207-662-7180
Fax: 207-662-7190

Massachusetts
BAYSTATE MEDICAL CENTER -
TRANSPLANT

Transplant Unit
300 Birnie Avenue, Suite 301
Springfield, MA 01107
Phone: 413-794-2321
Fax: 413-794-2603

BETH ISRAEL DEACONESS MEDICAL CENTER - TRANSPLANT
Division of Transplantation
110 Francis Street, 7th Floor
Boston, MA 02215
Phone: 617-632-9700
Fax: 617-632-9804

     
BRIGHAM AND WOMEN'S HOSPITAL - TRANSPLANT
Renal Transplant Division
PBB-215
75 Francis Street
Boston, MA 02115
Phone: 617-732-6866
Fax: 617-732-7832

 
CHILDREN'S HOSPITAL BOSTON - TRANSPLANT
Transplant Center
Farley Four
300 Longwood Avenue
Boston, MA 02115
Phone: 617-355-7636
Fax: 617-730-0342

     
LAHEY CLINIC - TRANSPLANT
41 Mall Road
Burlington, MA 01805
Phone: 781-744-8974
Fax: 781-744-5009
 
NEW ENGLAND MEDICAL CENTER - TRANSPLANT
Transplant Center
Box #40
800 Washington Street
Boston, MA 02111
Phone: 617-636-5592
Fax: 617-636-8228
     
MASSACHUSETTS GENERAL HOSPITAL - TRANSPLANT
Transplant Center
55 Fruit Street
Boston, MA 02114
Phone: 617-724-8610
Fax: 617-724-8652
U-MASS MEMORIAL HEALTH CARE SYSTEMS - TRANSPLANT
Transplant Unit
55 Lake Avenue North
Rm S3840
Worcester, MA 01655
Phone: 508-334-1269
Fax: 774-441-8098
 

UNIVERSITY HOSPITAL / B.U. MEDICAL CENTER - TRANSPLANT
Doctors Office Building
720 Harrison Avenue, Suite 700
Boston, MA 02118
Phone: 617-638-8430
Fax: 617-638-8427

 
New Hampshire
DARTMOUTH HITCHCOCK MEDICAL CENTER - TRANSPLANT
Transplant Unit
One Medical Center Drive
Lebanon, NH 03756
Phone: 603-653-3931
Fax: 603-650-0924

Rhode Island

RHODE ISLAND HOSPITAL - TRANSPLANT
Transplant Services
APC 921
593 Eddy Street
Providence, RI 02903
Phone: 401-444-8562
Fax: 401-444-3283

 
Vermont
FLETCHER ALLEN HEALTHCARE
MEDICAL CENTER HOSPITAL OF VERMONT TRANSPLANT

Transplant Unit
1 South Prospect Street
Burlington, VT 05401
Phone: 802-847-4774
Fax: 802-847-3619


Kidney Disease and Quality of Life (KDQOL-36) Survey

Based on the requirements in the Conditions for Coverage, and the health-related quality of life survey that CMS has adopted as a new CPM, a facility must administer the KDQOL™-36 at least once per year. The KDQOL™-36 is a multi-purpose, short-form health survey with only 36 questions that includes physical & mental functioning and kidney-specific information.

The Medical Education Institute, Inc. (MEI)/Life Options (www.lifeoptions.org) designed an online version of the KDQOL™-36 for social workers to gain practice with the tool, see the questions, subscales, norms, and preview the reports and evidence-based suggestions for improving scores. Take the survey here - as a hypothetical patient. Note: Currently, the online survey does not save data. It was created as a learning tool for renal professionals. However, a subsequent project is planned for late winter that will let facilities score patient and facility data and track it on your unit’s computer.


Useful Links

centers for medicare and medicaid logo image link
AAKP image link
KTDA image link
United Network for Organ Sharing image link

DFC Medicare image link

ESRD Forum image link
American Kidney Fund image link
Coalition on Donation image link


National Kidney Fund image link
Life Options image link
30 Hazel Terrace | Woodbridge, CT 06525 | Ph: 203-387-9332 | Fax: 203-389-9902 | info@nw1.esrd.net