Care Planning, Caregiving, COVID, Needs Navigation, Palliative Care
When Patient Advocacy Ignites Your Professional Passion: The Power of Helping Hands and Helping Harvest
Jamie Stokley, NPAF volunteer, shares her moving story about what led her to establish Helping Hands and Helping Harvest.
As part of the Health Needs Navigation campaign, we are capturing perspectives that get to the essence of why everyone’s health needs navigation. To learn more about the campaign and to see our resources, visit the Health Needs Navigation campaign webpage.
I began taking care of my mom when I was 17. She had just been diagnosed with lupus and chronic obstructive pulmonary disease (COPD). There were hospitalizations, extended care and even homecare services to arrange. Advocacy to make sure her needs were met became a huge part of her enhanced quality of life. When there wasn’t enough money to hire professional advocacy services, I did it myself. I made sure my mom had what she needed to live a good life, until the day she took her last breath on September 18, 2014. What if she had no voice? What if her socioeconomic status impacted her quality of life when she became disabled? I still ask myself these “what if” questions daily, especially when I consider the crucial role patient advocacy plays for people coping with unthinkable challenges.
After my mom passed, my passion to amplify the voices and experiences for other patients in my community was further ignited. I was determined to advocate for the disabled and aging and impact as many lives as I could in the Cape Fear region. I established Helping Hands of the Cape Fear (Helpingcapefear.com) to champion the voice of the aging and disable communities that struggle with home and healthcare resources.
As the CEO of Helping Hands, we provide quality homecare services to the disabled and aging community, specializing in advocacy and needs navigation services. My experiences assisting the first two clients of Helping Hands sparked the need to be a voice for financial and social needs navigation.
Our first client was an elderly 86-year-old woman who lived alone in a very wealthy neighborhood. She had no family around and no one to help her navigate her care. I promised her I would stand by her and do everything in my power to help her age at home and have fun while doing it! With social services threatening to put her in a nursing home, families being far away, bills due, insurance policies lapsed, I came in with a passion to advocate for this remarkable person and to make sure what mattered to her was part of the care plan. At that time, I was her voice, her family, her caregiver, and even stood as her guardian until her daughter could get to town. With this support, I’m gratified knowing that this client enjoyed every minute, even during her last days. She ate out at her favorite restaurants, shopped at her favorite stores, and said for the first time in a long time, she felt “free.”
Another client of mine came from a lower socioeconomic background and navigating the health care system was hard for her. She could barely afford any care for her mom and her mom was left at home for hours at a time, monitored by her daughter from work, using a smart watch to make sure she was safe and okay. Affording housing and food was becoming a struggle and she had no access to needed resources. She had little money to pay for services.
Witnessing the positive impact of one client who could afford the services and the negative impact on the family that couldn’t was heart wrenching. It breaks my heart when these families say they are alone in caring for their loved ones, can’t find any resources, and their loves ones are being forced to go into nursing homes because of it. I’ve seen firsthand how patient advocacy has a positive impact for these populations. Sadly, I’ve also seen what happens when families cannot afford needed advocacy services or extended hours of care. It’s challenging to see these situations happening to people in my community all the time. This was the turning point that led me to establish Helping Harvest Foundation, a 501(c)(3) organization.
At Helping Harvest, we advocate for our clients who are not financially stable. We consider it our duty and privilege. Unfortunately, the waiting list continues to grow because we alone cannot meet our community’s demand for these critical support services. Advocacy services add value and quality to the lives of our disabled and aging communities. Providing these services and equity should be our first concern.
I’ve seen firsthand how patient advocacy has a positive impact for these populations.
These experiences also fueled my fire to join National Patient Advocate Foundation’s volunteer network to extend my reach even further. Working together to advance policies that embed needs navigation services as part of healthcare, allows us to bring hope to working families who struggle to find essential services and resources for their loved ones. As an NPAF volunteer, I am committed to bringing needs navigation services to the attention of our legislators and other influencers, so we can all make a difference. This is where coming together counts.
Jamie Stokley is the CEO and founder of Helping Hands of the Cape Fear and Helping Harvest Foundation. She is also a volunteer for NPAF and resides in North Carolina.