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Knowing About and Accessing Resources for Your Patients

November 11, 2010 | AONN+ Blog | Tools & Resources
Featuring:
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Editor-in-Chief, JONS; Co-Founder, AONN+; University Distinguished Service Professor of Breast Cancer, Administrative Director, The Johns Hopkins Breast Center; Director, Johns Hopkins Cancer Survivorship Programs; Professor of Surgery and Oncology, JHU School of Medicine; Co-Creator, Work Stride-Managing Cancer at Work

When navigating patients with cancer, you soon will notice the need for many support services, given that your goal is to eliminate those barriers preventing your patients from getting their cancer treatment. If you are new to your navigation position, you may not be aware of available community resources (or even institutional resources) nor exactly what these resources provide. So put on your walking shoes, and get yourself out there to find out. Here are some suggestions how to begin.

  1. Start by looking within your own doors. Meet with the oncology social worker. There may be several of them. Sometimes they are assigned to specific types of cancers, and other times they may be assigned by nursing unit (inpatient unit for pancreatic cancer) or by department (surgical oncology, radiation oncology, etc). Such individuals can be a wealth of information. They also play a key role, usually in providing psychosocial support and even assisting with financial barriers. They may be the individuals to help get a patient qualified for financial assistance or to provide taxi vouchers funded by the hospital for the patient to travel for daily radiation therapy. While meeting with the social worker, learn about other community resources, especially how they are accessed and utilized. Also give the social worker an overview of your responsibilities and how you as well can be of help to him or her.
  2. Telephone (or preferably visit) your local American Cancer Society's headquarters. Educational materials, Road to Recovery (volunteers to drive patients to their oncology appointments), Reach to Recovery (consisting of one-on-one support for patients with breast cancer), their 24-hour hotline number connecting a patient or family member with a nurse to ask medical questions, as well as other valuable services are commonly underused because healthcare professionals aren't aware of them.
  3. Other community services can be found by doing an Internet search using the words: cancer support, free cancer transportation, free cancer education, patient advocacy organizations, wigs, prostheses, and other words that may be specific to the type of cancer patient you are supporting. In addition, many grassroots nonprofit organizations are designed to fulfill a specific need. Some are pro bono legal offices offering free legal services for cancer patients. Others help offset copayments that are too high to be affordable for a patient. Support groups for patients with specific types of cancers and even housecleaning services are available to help ensure a patient is in a clean environment, thus reducing risk of infection during surgical and chemotherapy treatments. These organizations may be national with local chapters, or small and area-specific to your geographic location.
  4. Keep track of the resources you are using too. Sort the data by type of service and number of patients who have received help from them. This will be important information later, when demonstrating how you do what you do from a navigation and barrier-elimination perspective. It also can show you, in an aggregate way, what resources are missing that still need to be found.
  5. What do you do about barriers that can't be "fixed" for a patient? Create a wish list of these barriers. It might be the need to provide food to the patient and family during her cancer treatment. Perhaps a desire to offer the patient an opportunity to feel better about her self-image by getting a pedicure. Think out of the box. A way to provide counseling for her teenage children who are going to lose their mother in the coming months. These are things that you then can bring to the attention of the community resource groups you are using to see if they have an interest in expanding their services. It also is a good starting point for a discussion about philanthropy. There may be a patient who wants to give back in some way, appreciative of the navigation and support she has received from the cancer center. Letting that individual know what the needs are can be an effective way to create a special fund to begin these services. It also can trigger interest in holding a fundraiser, with the goal to support these unmet needs of your patients going forward.

Working in a vacuum is exhausting and frustrating. Working as a team within your own cancer center doors as well as more regionally within your community is a lot more enjoyable and gets more accomplished. Start making the rounds! You are there for a shared purpose—to support cancer patients on their journey through treatment. 

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