Assemble Your “mAss Kicking” Team Part II

Monday, October 15, 2012
By, Stacia Wagner
This article is an exerpt from the book, Planet Cancer: the frequently bizarre yet always informatice experiences and thoughts of your fellow natives by Heidi Shultz Adams and Christopher Schultz published in 2010.

This information will help you figure out who can help you with both the practical side of what you need during and after treatment and who can help with the emotional, psychological aspects of cancer. The following descriptions are based on personal and professional experience. These are the roles which the professional should fill.  However each hospital and each person varies on real skills and expertise. If you are still in need of assistance, ask your medical team for advice or reach out to others on My Planet to see where they went.

Social Worker

Each oncology team should have an oncology social worker. If you have not met one, ask her Dr. to make the introduction. This person should have special training on the ins and outs of services like insurance, Social Security Disability Insurance (AKA SSDI), Medicaid, employment issues, and resources. Social workers should also be able to provide emotional support for the millions of emotional issues which come with a cancer diagnosis and its treatment. Here are some of the things you should be able to go to your social worker for:

  • What qualifies a person for SSI/SSDI and how to apply for it? (hint-ask the social worker if they have a contact at the SSI office who can speed up the application process). Social workers can also assist with the completion of the application.
  • How to talk to your employer about what you need including extended time off? What accommodations can you ask for at work and what is not realistic?
  • How to explain your resume when you go back to looking for work and there is a gap? If the social worker does not know, ask her about Cancer related employment resources? If your social worker is not familiar with these, try the local college career center?

Health insurance can provide lots of challenges. Your social worker is one of the many people who can assist you with resources which might assist with uncovered drugs and services, the ins and outs of Medicaid, finding insurance coverage, and who to talk to about specific bills.

Communicating, mediating, and coordinating with the rest of the medical team. The social worker can arrange for team meetings to assist in understanding any medical questions or concerns you have. If you want her to act as your representative in getting questions answered, she can do that as well.

Transportation/lodging and any day to day needs you have. Your social worker can assist you with resources for all of the new stuff that comes with a cancer diagnosis. They are really great go to people. Unfortunately, there may not be a resource for your needs. However if you ask the social worker, he should have access to other social workers across the country who may be able to come up with answers.

If you are going to need “stuff” when you go home (someone to stay with you, home “improvements”, other) the social worker can link you to the resources you need.

The social worker really should be someone you can talk to about both concrete needs and all of the emotions you are having. For specific services, you are going to have to be assertive and ask for assistance.

Hospital Patient Advocate/Representative

This person should be able to act as your spokesperson. If for some reason the hospital does not have patient advocates or you want an extra one, you may want to ask someone you are comfortable with or who you know is smart and assertive to fill the role. Some of the things this person should be able to do for you are:

  • Navigate what is going on. In addition to the medical team, the advocate should be able to explain all of the medical jargon, clinical trials, tests, procedures and treatment choices. If they don’t know the answer, they will ask the questions and help you get the answers.
  • Planning and scheduling-If you want your advocate to assist you with scheduling appointments or tracking medications, let them know.  Think about what type of scheduling works best for you. Do you want appointments on the same day or spread out? How much information do you want to share with your advocate? Do you want the person to come with you to appointments? If not, how will she get an update? Make sure you let your docs know who your advocate is and the contact information?
  • Act as a Record keeper-Your advocate can keep written documentation of your schedule, your treatment, your reactions to treatment and the answers to your questions.
  • Act as a Spokesperson-Your advocate can be your spokesperson with both the medical team and your friends and family. The situation may change, but if there are times you want the advocate to let people know what is going on let them know.

Hospital Finance Department

It is helpful if you can meet with a representative from the finance department as soon as possible. This person can help you understand ahead of time what your insurance will cover and what percentage of services will be covered. They can explain to you when you will and when you won’t need pre-authorization for services. In order to eliminate spending ten hours on the phone with your insurance company, you can ask the representative to talk to your insurance company about policy issues.  You can also have them review and explain your bills. These services are in most of the patient financial representative job descriptions, but the quality and expertise varies hospital to hospital and person to person. You may have better luck working directly with your health insurance representative. However, the hospital representative will know the hospital billing, prescription and authorization system better than anyone else. He will know about financial assistance provided by the hospital and how to negotiate what you need to pay.

Health insurance representative

This person can be a lifesaver. Key to getting good service is calling the representative number listed on your health insurance card. You will need to know your policy/group and/or member number. Ask the representative some basic questions about your policy

  • What percentage of drugs are covered?
  • Do I need to ask for generic when possible?
  • How do I get a referral for out of network services?

If this person is helpful and courteous, keep his or her name. It helps to have one contact person as she will be familiar with your case and you will not have to repeat yourself.

This person will be able to answer questions on:

  • Co-pays
  • Premiums
  • Lifetime maximum
  • Out-of-network
  • Second opinions
  • Clinical trial coverage
  • Complementary/alternative medicine coverage
  • Coverage for service such as at home nursing, equipment
  • Exclusions
  • Out-of-pocket
  • Co-insurance

Psychologist

A psychologist should be part of your medical team. Psychologists in oncology have expertise in dealing with many of the effects of cancer including depression, anxiety, insomnia, and pain. They are not just someone to talk to, but actually practice techniques which you can use at home or wherever you need them for relaxation, concentration, and dealing in general. The psychologist not only sees patients, but should be available to see every one else in your family who is impacted by cancer.Here’s the rub: this service is not always covered by insurance. Check with your insurance provider before seeking services. These services should be coded as a medical portion of treatment.

Psychiatrist

Everyone deals with cancer and its effects differently and sometimes assistance is required that includes more drugs, preferably the legal kind. These are they guys who can prescribe drugs for all of the psychological and emotional stuff, difficulties in clear thinking, and sleeping problems and anxieties you may experience as a result of cancer and its treatment. One of the areas people really forget to deal with, don’t have time to think about, or simply don’t give themselves permission to talk about is grief. Psychiatrist, psychologist, and social workers can all help you with this. Their methods are just different; you just have to figure out what works best for you.

*Neuro-psychologist

Specifically for brain tumor patients.  After treatment for a brain tumor, there can be a ton of subtle and not so subtle changes in the way you think, organize or memorize.These changes will impact school, work and overall day to day stuff. A neuropsychologist does testing which will show you what challenges you have as well as practical ways to deal with them. Not all treatment centers have a neuropsychologist. Your nurse practitioner or social worker should be able to recommend one. Ask the person if they have experience in dealing with brain tumor patients or survivors. This is a definite plus. Also ideally you have some testing done when you start treatment, so you know where you were before surgery and/or treatment.

by Stacia Wagner, Director of Survivor Programs at Children’s Brain Tumor Foundation

Check out Assemble Your mAss Kicking Team Part I by Vasu Divi MD

Medical Disclaimer
This website is designed to provide additional information to patients and their loved ones when faced with intimidating diagnoses. A physician or medical professional should be consulted before making any health related decisions. We serve as a portal for information so that an informed and efficient decision can be concluded by all parties involved.  The creators of this site are not responsible or liable, directly or indirectly, for any form of damages whatsoever resulting from the use (or misuse) of information contained in or implied by the content of this website. The purpose of mAss Kickers is to empower people with knowledge, not to specifically advise people how to address each unique situation.


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