What We Do and How To Find Us: Because Every Patient Needs an Advocate
As I was reading my Facebook page, I saw a post from a friend that said: “I won’t be able to get my MRI until the end of next week. I’m pissed.” This message alerted me to call a friend who needed a Patient Advocate. Here's a real-life example of what patient advocates do followed by a list of resources patients and loved ones can use to find a patient advocate.
My friend was diagnosed with Breast Cancer 5 years ago. She had a tough road; surgery, implants, infections, more surgery, chemo, and radiation…she has come through it and was doing well. A few months ago she started to have rib pain. She thought it was pain from exercising, but after diagnostic testing, she learned that her cancer was now in her bone. She was devastated. After a second opinion, she was started on Ibrance, has changed her diet and prayed. Her last visit with the oncologist showed that her tumors have shrunk – meaning that the medicine was working. So when I saw this message, I said: “oh no, now what.”
I saw this Facebook post on Sunday evening and wrote her back asking her if she wanted me to see if I could get the MRI moved up. She called me back right away and said, yes, anything I could do would be appreciated. She texted me over her oncologist’s name and number and I told her I would call first things in the morning. We talked about what was going on. She said that after working a long trip last week (she is a flight attendant), she started having hip/groin pain. She was worried, so she went to see her Oncologist. He ordered an MRI of the hips to see what was going on. Her Facebook post was written after she found out she would not be able to get the MRI for another week. As you can imagine, she was scared, in pain and did not understand why she had to wait that long. She was not given any alternative – she thought I just have to wait. I did not understand it either and was anxious to find out why there was such a long wait.
Here is One Example of What an Advocate Does:
I called the office first thing on Monday morning. As I listened to the prompts, I noted one of the options was to talk to a nurse navigator. I know the nurse navigator is an excellent contact to have so I paid attention to the choices. I pressed 2 to speak to the nurse navigator for my friend’s doctor. I got her voicemail so I left a message and asked her to call me back.
I hung up and called back to talk to the doctor’s nurse. I again listed to the prompts and this time pressed 3. Voicemail again. I left another message and decided to call back and push 0 to talk to the office. This time a LIVE person answered on the 4th ring.
The person identified himself as Tom. I told ‘Tom’ I was calling for my friend who has Metastatic Breast cancer and was seeing Doctor X. She was in last week on Thursday to see the doctor about a new pain in her hip. I shared that her doctor had ordered an MRI of the hips, to see what was going on, but the MRI was scheduled one week later on Thursday at 4:45 so she would not know anything till at least Friday which would be another week.
I explained to Tom; I was hoping to move up the MRI so that my friend could find out what was going on sooner rather than later. I let Tom know that the patient was distraught due to the wait and also that she was in pain and could he help her out?
Most people navigate the complex healthcare system reasonably well. But when you are sick, scared and worried, having an advocate with you is critical. A professional advocate is in place to make sure you use your voice to ensure the plan of care is meeting your needs. Professional Advocates are there for you to ask questions and to ensure care is efficient, safe and meets your needs.
He asked if he could put me on hold so he could check the chart. When he came back, he said the patient’s insurance company had authorized the MRI. That could have held things up, but as we have the authorization, the test can be done at any time. He suggested that I call Central Scheduling to see if they can move up the appointment and gave me the number.
I called Central Staffing and listened to the prompts and picked the ‘2’ to change an appointment. A person came on the line and asked how she could help. I repeated the story and was told to hold so she could check the computer. She came back and said that she could move the appointment up to THAT DAY at 3 pm. I thanked her and hung up.
An advocate can be a family member, a friend or a paid professional who the patient/family members can hire to work for them.
I called my friend and told her the good news. She was thrilled and grateful. I recommended that she call the oncology doctor’s office and make an appointment for the next day so she could find out the results of the MRI from the oncologist. I also recommend that after the MRI was done, to ask for a disc of the MRI so that she could take it to the appointment with the oncologists so he could review the films when he saw her.
I also recommended that she make it a point to meet the Breast Cancer Nurse Navigator when she was at the doctor’s office. The Nurse Navigator is a good person to know as they understand the system and can help streamline the process as needed. I told my friend to let me know how things go and to call me if she wanted to talk.
My friend got her MRI done as planned. She also saw her oncologist the next day. She sent me a text after her appointment and shared that her doctor said there was NO NEW Tumor. He felt her pain was related to a muscle tear and that she should rest and let it resolve. He would see her in two weeks.
This was a good outcome, but it shows why everyone needs an advocate. My friend is a smart, assertive woman. She functions well and can stand up for herself. BUT she is also a patient who has a serious condition that has her scared and worried about where her life is going. She has already had a significant setback learning her cancer has spread to the bone, so any new pains cause her fear factor to rising. Her capacity to think clearly when a crisis occurs and advocate for herself is diminished.
Having an advocate step in, to make calls, to ask questions and appeal to the healthcare teams for help is something that everyone needs. I was able to help my friend and have her MRI moved up so she and her doctor would have the information they needed to understand better what was going on and to determine treatment. As they say, information is power!
What I Hope You Learn From This Post:
Most people navigate the complex healthcare system reasonably well. But when you are sick, scared and worried, having an advocate with you is critical.Most of the healthcare challenges that arise can be worked out by asking a few questions and asking for help. A professional advocate is in place to make sure you use your voice to ensure the plan of care is meeting your needs. Advocates know how the healthcare system works and who to go to effect change. Professional Advocates are there for you to ask questions and to ensure care is efficient, safe and meets your needs. Advocates do research and find the resources you need.An advocate can be a family member, a friend or a paid professional who the patient/family members can hire to work for them.
How to Find an Independent Professional Patient Advocate:
Finding an advocate in your area is getting easier. Today there are professional organizations where patient/health advocates belong. Most have search engines that allow the patient or their caregivers to find an advocate who can help them. Here are a few that you can review.
AdvoConnection: the site provides access to patient advocates, patient navigators, case managers, elder care advocates, home health, medical billing advocates, legal and other forms of patient assistants who may be able to help you or your loved ones manage those many healthcare challenges. The AdvoConnection Directory was developed to showcase and make readily available the member advocates of the Alliance of Professional Health Advocates. To search for an advocate, click here: AdvoConnection.
Aging Life Care Association: is a professional organization for professionals who call themselves Aging Life Care Professionals – also known as – geriatric care managers. Both, take a holistic, client-centered approach to care for older adults or others facing ongoing health challenges. Working with families, the expertise of Aging Life Care Professionals provides the answers at a time of uncertainty. Their guidance leads families to the actions and decisions that ensure quality care and an optimal life for those they love, thus reducing worry, stress and time off of work for family caregivers. Click here to find a member of the Aging Life Care Association.
Greater National Advoctes: GNANOW.ORG is a national directory of Independent Patient Advocates. It's a highly visible user-friendly website where patients and loved ones can quicky search for and connect with advocates according to their credentials (ie: «RN» or «BCPA»). Many advocates who are listed on AdvoConnection, NAHAC, ALCA, & WASHAA are also listed in the GNA directory where they submit blogs and benefit from GNA's impressive marketing and social media initiatives. Greater National Advocates is a 501©3 foundation determined to transform independent patient advocacy into an everyday household term. It's free to get listed on Greater National Advocates.
National Ass ociation of Healthcare Advocate Consultants: is the professional healthcare advocacy organization; they are dedicated to the improvement of patient outcomes through continuing education, promotion of national standards of practice, and active pursuit of policy changes, leading to a high standard of person-centered healthcare. To find an advocate click here: NAHAC Directory
Patient Advocate Certification Board: This is the certification body that has developed the first national patient advocate certification. Achieving the national certification allows consumers to know the competencies a professional should hold when working as an advocate. To learn more, visit the website: www.pacboard.org
Washington State Health Advocacy Association: The Washington State Health Advocacy Association (WASHAA) is a nonprofit organization made up of healthcare professionals, patients, community members, and many others, who are dedicated to promoting health advocacy in Washington State, empowering patients and improving healthcare outcomes. To find a Health Advocate click here: www.washaa.org
Thank you for reading this post. If you have used an advocate to help navigate the complex healthcare system, please leave a comment about your experience.