NEW! NKF Peer Mentoring for Living Donors and Those Considering Living Donation

[kellicNKF]

The National Kidney Foundation is excited to announce that our NKF Peers program now offers support for living donors and those considering living donation! We have a group of trained living donor peer mentors ready to provide support and share their experience with living donation. Participants are connected 1-1 to a peer mentor through a toll-free phone system which protects your private number and avoids long distance charges. If you would like to talk with a living donor call 1-855-NKF-PEERS (855-653-7337) or email nkfpeers@kidney.org.

If you have any questions please feel free to reach out to me anytime!

Best,
Kelli

KELLI COLLINS, MSW
Senior Director, Patient Services
T: 800.622.9010 ext 144
30 East 33rd St
New York, NY 10016
www.kidney.org

 

[livingdonor101]

Kelli,

I'm sure others have the same questions I do, so I'll post them here:

1. How were the "living donor peer mentors" chosen?

2. Who trained them and using what materials?

3. What services are the "living donor peer mentors providing"? Are they available post-donation to assist any LD that may experience problems with billing, complications or inadequate care by their transplant center?

4. Are the "living donor peer mentors" being paid, and if so, how much?

5. What other qualifications do the "living donor peer mentors" have to provide support and counseling services, aside from being living donors themselves?

6. What sort of liability are potential living donors assuming by using these "peer mentors"? In other words, what assurances do potential LDs have that the information they're getting from the "peer mentors" is correct and comprehensive?

I look forward to your response.

Cristy

[kellicNKF]

Cristy,

Great questions thank you for asking! 

1.   Our first group of peer mentors consists of people who have been involved with NKF and worked closely with our local offices throughout the country or who were referred to us by our professional members who work in living donation.  Interested mentors are initially interviewed and assessed by myself, a licensed social worker.

2.   NKF has offered NKF Peer mentoring to dialysis and transplant patients for 4 years and decided to expand our model to include living donors. NKF developed a comprehensive training manual to accompany our interactive group training for living donor peer mentors which culminates in role plays and a written evaluation.  In creating this program we worked closely with a group of living donor transplant professionals as well as living donors themselves. 

3.   Living donor peer mentors are providing support to either those considering living donation or those post-donation seeking support. Mentors offer support by sharing their experience with living donation, listening, being empathetic and able to relate to what someone seeking support may be going through. They are NOT counselors, educators, advisors, therapists, or any other substitute for a trained professional.  Therefore, they are not able to assist with billing issues, complications or inadequate care by a transplant center.  These types of issues would be referred back to me, the oversight clinician, at NKF and I would be able to provide them with resources and steps to follow to file a complaint, appeal, etc. 

4.   Peer mentors with our NKF Peers program are not paid; they are all volunteers.

5.   People who have been living donors who are interested in becoming a peer mentor with our NKF Peers program need to be empathetic and open to supporting those seeking support without bias or agenda.  All mentors must also have email.  As noted above, all interested mentors are thoroughly evaluated and must complete an extensive training process. 

6.   NKF Peers is a comprehensive mentoring program offered by NKF. This is not an educational program - it is a support program. All participants are encouraged to talk with their transplant center for all questions they have regarding risks and benefits of living donation as it relates to their individual health and personal circumstance.  NKF also offers educational resources for living donors: www.livingdonors.org.

Thanks again for your questions!  Please let me know if you have more!


Best,
Kelli
KELLI COLLINS, MSW
Senior Director, Patient Services
T: 800.622.9010 ext 144
30 East 33rd St
New York, NY 10016
www.kidney.org

 

[Clark]

Dear Kelli,


  Are you seeking additional applicants as peer mentors? If so, please post explicit qualifications, such as where this program currently exists and where you plan to expand it, and next steps for applicants. Thank you.

[kellicNKF]

Thanks for your question Clark. Our NKF Peers program is a national program that connects people 1-1 over the phone through a toll-free phone system - so anyone, anywhere in the U.S. is eligible to participate. We are not currently seeking additional peer mentors but as our program grows we will be in the future!  If interested you can contact us at 1-855-653-7337 or email nkfpeers@kidney.org and we would be happy to add you to our list of interested mentors and keep you updated when new mentors are needed. 

Best,
Kelli

[livingdonor101]

Kelli,

You claim there's an extensive training process, but you've provided no concrete examples or evidence. I visited livingdonors.org and frankly, if it's an example of NKF's attitudes toward LKDs, it does little to assuage the concerns I have about this program. The information provided to prospective living donors is incomplete and lacking references.  More so, half the site is dedicated to teaching would-be recipients how to ask for a kidney.

I realize the mention of your social work license is meant to reassure me and others, but transplant center professionals are licensed in their various disciplines too. As 60 years of history can attest, this has done very little to create a protective and caring environment for potential or current living donors. The Independent Donor Advocate was created by CMS Final Rule 2007 as an attempt to counter the acknowledged pro-recipient bias of the transplant system. In the ensuring 8 years, we've seen plenty of problems with the implementation, education, and performance of those individuals, and very little sign of resolution.

One example:

Steel, J., Dunlavy, A., Friday, M., Kingsley, K., Brower, D., Unruh, M., Tan, H., Shapiro, R., Peltz, M., Hardoby, M., McCloskey, C., Sturdevant, M., & Humar, A. (2012). A National Survey of Independent Living Donor Advocates: The Need for Practice Guidelines American Journal of Transplantation, 12 (, 2141-2149 DOI: 10.1111/j.1600-6143.2012.04062.x


How are these "mentors" evaluated? Will all phone calls be monitors and taped, the conversations reviewed and feedback given to the "mentor"? What quality control measures has NKF implemented to ensure the people seeking "support" are not harmed?

What is NKF and/or the peer mentor's liability in this situation? Are the people seeking "support" required to sign a waiver?

 


NKF's stated mission is the "awareness, prevention and treatment of kidney disease". As we all know, living donor kidneys are viewed as the "preferred" treatment for kidney failure. So how will you, as the peer mentor program manager, or NKF, or the peer mentors, ensure that prospective living donors' concerns, health or well-being will be prioritized ahead of would-be recipient's "need" for a transplant?


Not so long ago, NKF claimed that living donors were part of their constituency, and vowed to advocate for them (See: End the Wait). They formed a living donor council. They set up a survey and encouraged living donors to fill it out.

In a very short time, the NKF email list-serv, which many people found invaluable, was shut down without warning or explanation. The LD Council went dark. And the survey data disappeared in the ether. What assurances do we have that this will be any different, or that we can trust NKF to look out for *our* interests as opposed to the encouragement or promotion of living donation?   

 

[kellicNKF]

Hi Cristy,

I’ll be glad to share additional information about the program here.

NKF has long supported living donors and continues to do so. The NKF’s Living Donor Council (LDC) is still active and in March, we surveyed the membership to ask for input about ways that NKF could better support living donors and those considering donation. The responses from the survey showed that people considering donation wanted more support throughout the process of making a decision about donation, and that they wanted to be able to talk to someone who already donated. In addition, some people who already donated wanted support from another living donor. The idea of expanding our NKF Peers program to include donors and potential donors was rated highly, with 69% of respondents saying that they would be “Very interested” in participating in such a program.

Based on that feedback, NKF worked with our LDC Executive Committee, along with additional living donors and Living Donor Advocates, to create and develop this program. The NKF Peers program’s sole purpose is to provide support to living donors and those considering living donation.

The training process for peer mentors is conducted through a series of conference calls where a variety of topics are presented and discussed, including confidentiality; empathy; active listening; and starting, maintaining and ending a peer relationship. As previously mentioned, it is an interactive training, utilizing role plays throughout with a written assessment at the end. We vet potential mentors by individual assessment, group training and finally the written assessment. Each of these pieces was developed in collaboration with living donors and professionals who work with living donors. 

Phone calls between mentors and those interested in receiving support are not recorded or monitored. We explain the program to participants as one person’s experience with living donation and always refer back to the transplant center for any concerns or questions they have about their individual process. In addition, mentors and those receiving support can contact me directly with any questions or issues.

The benefits of peer support from “someone who has been there” have been well-documented in the literature for many chronic illnesses. This is further evidenced in the existence and success of this message board – people want to connect with others who have been through similar experiences. As I mentioned before, our existing NKF Peers program has been in effect for 4 years - you can find a literature review on the benefits of peer support here: www.kidney.org/sites/default/files/docs/02-10-4196_ebb_benefitsprofessionalflyer.pdf.

NKF encourages people to be well educated about their choices and advocate for themselves by being an active member of their healthcare team. Our website provides general information to help people learn more, and we continuously work on adding new content to our website for living donors, potential donors, and kidney patients. NKF, like other organizations, serves as a guide, source of support and an educational resource, but by no means a replacement for healthcare professionals. Every person is different and they need to discuss their individual situation with the transplant team.

Thank you again for your questions.

Best,
Kelli

[donor99]

great job Kelli