Social workers play an integral role on my healthcare team

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I became a patient at the Inova Fairfax Hospital’s Advanced Lung Disease and Transplant Center in Virginia. Inova is one of 81 locations included in the Pulmonary Fibrosis Foundation’s Care Center Network (CCN).

One unique feature of these centers is their multidisciplinary team approach to patient healthcare. This includes social workers, who are often working quietly in the background.

Social work in a transplant environment

Reading the position description for a social worker, it seems like a relatively straightforward role. One listing I reviewed noted that a social worker “intervenes with patients/families regarding emotional, social, and financial consequences of illness and/or disability.”

However, there are so many moving parts within those quotation marks. A social worker in a clinical setting will not only interact with patients and family members but also with other clinic staff and people who provide external resources.

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Pre-transplant support

My IPF diagnosis caught me off guard. It not only changed my world but also my wife’s. Susan and I quickly learned that being seen at a CCN site granted us patient-centric care.

Contact with a social worker should not carry a negative stigma. They can provide a great deal of assistance, ranging from one-on-one interactions to group meetings.

After my diagnosis, I continued working until September 2017. At that point, I elected to go on disability. The paperwork involved can be daunting. Working with a social worker on the initial application and subsequent updates made it a more manageable process.

A social worker also helped me obtain my medication. The two anti-fibrotic drugs available to me, Esbriet (pirfenidone) and Ofev (nintedanib), were both expensive. After discussing potential side effects with my doctors, I elected to use Esbriet. My pharmacy required an initial prior authorization as well as an annual reauthorization before my prescription could be filled. Those requests went through my social worker.

Social workers at my clinic also led a support group for pulmonary fibrosis patients. Prior to the pandemic, this group met in person monthly. Members of the group often showed up early to network, many of them bringing lunch to enjoy before the meeting. The support group regularly arranged educational presentations on topics relevant to the patients. When COVID-19 halted in-person meetings, we quickly pivoted to using Zoom. Those meetings continue to provide a necessary connection between the patient community and the clinic.

Post-transplant support

Social workers were also an integral part of my healthcare team when I was hospitalized for my lung transplant in July 2021, as well as when I was readmitted for pneumonia.

Before I was discharged from the hospital following my transplant, a social worker prepared Susan and me for what lay ahead. The adjustments we’d need to make would be unlike anything we’d ever experienced.

‘Social work breaks barriers’

March is Social Work Month. According to the National Association of Social Workers, the U.S. Bureau of Labor Statistics reports that there were more than 715,000 social workers in the U.S. in 2020. The theme for this year’s awareness month is “social work breaks barriers.” Across the many types of social work, the goal remains the same: empowering people to live their best life.

This is my opportunity to thank the social workers who supported Susan and me on our journey. Elizabeth Davies-Wellborn has been a part of the Inova team for years and is the social worker I would see during my care team’s rounds in the hospital. Dianne Duke recently transferred into the clinic and provides support to patients and caregivers. Their counsel and support have allowed me to make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.