A week ago, SHAREing & CAREing received this message from a frustrated patient:
I have been diagnosed with breast cancer. The first surgeon suggested was stopping practice, the next is out of network. I got an oncologist in the network, but I was told to get a referral from a surgeon first. My appointment for the primary care doctor was cancelled. I rescheduled one for 2 days later. I just don’t know how I am supposed to be getting things done.
Unfortunately, this kind of situation is common, especially with patients who are uninsured or under-insured. But it can even happen when insurance is perfectly adequate.
Why Do I Need Patient Navigation?
With so many tests, doctors, forms and treatments involved with a cancer diagnosis, it’s no wonder that simply navigating the insurance and medical system can be a source of anxiety. Many patients we’ve talked to have said that this is one of the most frustrating parts of treatment. An advocate who knows the system can help with a variety of tasks to take the pressure off you and your family during this stressful time. Patient navigators may:
- Provide individual emotional and psychological support to patients and caregivers
- Help fill out confusing insurance paperwork
- Help understand and work within insurance coverage limits and reduce out-of-pocket expenses
- Help with the appeal process of health insurance coverage denials
- Explain your cancer diagnosis and treatment options in understandable terms
- Provide information on local cancer support groups (like the SHAREing & CAREing survivorship support group)
- Go to appointments with you to be an advocate and provide emotional support
- Help arrange transportation to cancer treatment and appointments
- Know of ways to access low-cost and free cancer treatments, like studies, free community programs, and drug company programs
- Help arrange child-care help
- Recommend good local doctors
- Give tips on managing treatment side-effects
- Know of ways to access low-cost and free cancer prostheses and wigs and other post-treatment supplies
- Help with translating documents and communicating with doctors if English is your second language or if you have problems reading or seeing
- Help getting treatment even if you are uninsured or under-insured
- Help schedule your appointments efficiently to fast-track your diagnosis and treatment
- Remind you about screenings and check-ups after your treatment is done
Most importantly, patient navigators help you know YOU ARE NOT ALONE. Most cancer patient navigators have personal experience, either as medical professionals or caregivers, or as cancer survivors, like the staff and volunteers at SHAREing & CAREing.
Finding A Patient Navigator For Your Cancer Treatment
If you are a patient at a cancer center like Queens Cancer Center or NewYork-Presbyterian/Queens, you’re in luck. As of 2015, to be accredited by the American College of Surgeons Commission on Cancer, cancer centers must have patient navigation programs. If your doctor hasn’t already directed you to their in-house patient navigator programs, ask if they have one. Cancer center navigation programs are usually free and are incredibly helpful in coordinating care and appointments between doctors within the center. Some even have workshops that educate newly diagnosed patients about their specific form of cancer.
In the past, friends and family have often filled the role of patient navigator. Keep in mind, though, that being a patient navigator is a lot of work and can be taxing on someone that might already be you primary caregiver. Consider whether you would want to burden this person with the additional work, or whether you might have another friend or family member (or several!) that could step into the role. Many people, when hearing about your cancer diagnosis, want to help but have no idea what to do. Ask for specific help like, “Can you take me to radiation treatment every Thursday?” You might be pleasantly surprised by the generosity of those around you.
You can also hire a patient navigator that operates on a private consultant basis. Before hiring, ask what experience they have with your condition, your insurance company, and the hospitals and doctors you plan to visit. Many professional patient navigators have medical backgrounds and degrees. Ask about their qualifications and whether or not they are a member of National Association of Health Care Advocacy Consultants.
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Free Cancer Patient Navigation From SHAREing & CAREing
At SHAREing & CAREing, we provide free patient navigation services to those in need. Our organization was founded in 1994 as a grassroots, community-based not-for-profit by four breast cancer survivors who knew that the lack of solid breast cancer services in Queens County that they were experiencing affected many other women, particularly those living in Astoria/Long Island City and the surrounding communities. Since then our mission has evolved to provide cancer outreach, education, support and advocacy services to all women and men, particularly those who are under-or uninsured members of minority groups who have the least resources of all.
Each of us, as well as our dedicated group of survivor volunteers, has been through the dreaded diagnosis and treatment of cancer and experienced the loneliness, fear and stigma that go with it. We experienced the treatments, the side-effects, and the complex insurance and medical systems.
We believe that no one should feel alone or hopeless during a time of illness. We believe that everyone, no matter their insurance status or financial ability, deserves quality care. We know that healthcare is not equal and that part of the battle is navigating a complex system. We believe that being informed and having a strong support system empowers us and gives us hope. SHAREing & CAREing is that support system.
If you have questions about your cancer diagnosis, need help with insurance or other patient navigation services, or just need someone to talk to, contact us. You are not alone. We’ve been there and we can help.