Many stakeholders in the workers’ compensation industry have been engaged in conversations regarding opportunities to improve the workers’ comp system, but the perspective of injured workers has been sorely lacking in these conversations.
This perspective has been difficult to obtain because there are no respected “injured worker” advocacy groups such as there are in the group health setting. Attorneys and unions are not the true voice of the injured worker: They have their own sets of priorities.
The voice of the injured worker is an important one. It will help us gain a deeper understanding of the challenges in the workers’ compensation setting as well as give us greater empathy for what they are facing.
At the 2016 Comp Laude Gala, the Alliance of Women in Workers’ Compensation sponsored a session featuring injured workers talking about their struggles. It was an extremely powerful and moving experience that left few dry eyes in the packed room. In this article, we seek to convey the essence of that session. Our goal is for this information to be used to help us understand the obstacles faced by injured workers so that we can be better advocates for them and, ultimately, achieve better outcomes on claims.
The participants included an injured worker in recovery from his dependency on opioids, now taking his life back 14 years after his injury. Another, with two prosthetic legs, continued working and leaves a legacy for the workers’ comp community. A third participant was a woman with incomplete quadriplegia, who started a business helping others with chronic pain.
All three of these injured workers have unique personalities that may have contributed to their successes. But the one thing they have in common, which was a deciding factor for all, was support, positivity and encouragement from people around them — especially those in the workers’ comp industry. The stories they shared should send the message that by taking responsibility for our actions, words and decisions, we can truly make a difference for injured workers as well as for our organizations.
For some injured workers, life can become a downward spiral of more and more pain medication with little relief. (Photo: Shutterstock)
“I had never hurt my back in my life, but I twisted it lifting something.” That was in 2000, before his 40th birthday. By 2014, Kenny had undergone two surgeries, multiple implants, epidurals and a myelography — which he described as “the worst thing in my life” — and was prescribed a cocktail of various opioids. Eventually, he was told by one medical professional that he would likely be dead in two years from all the medications he was taking.
“Your mind just goes,” he said. “You’re useless. Suicide — it's right there.” Two case managers and several years later, things were no better. Though he wanted to work again, the back fusions left him unable to walk, and the meds left him in a zombie-like state.
“It was scary,” said Kenny's wife, Karen. “I lost my husband; my boys lost their dad.”
Kenny and Karen's story might have continued that way forever, if not for the arrival of their third caseworker 12 years after the initial injury. “It was like she flew in on angel wings,” said Karen. “She took the time to get to know him. Nobody else did.”
The caseworker sent Kenny to a Florida hospital for treatment. There, he received rehab, biofeedback and the care he truly needed to be able to function again. Six weeks later he was no longer taking the Hydromorphone, the Fentanyl, the OxyContin, the Percocet, or the Duragesic patches. Three years later, Kenny is still off the medications, including aspirin. He goes to the gym daily to walk, do light stretching and exercise. “I’d tell anyone, ‘Get off the drugs; that's 50% of your pain,’” he said. “Your body will help heal you.”
Previously, one physician had told Kenny he wasn't going to get any better. The first caseworker was “distasteful,” he recalled, and he never even met the second one in person. The third caregiver was the right person to help turn things around.
“It just really matters what you say — as a doctor, nurse or case manager. And that was the big difference for us,” Karen added. “She never said anything negative. She always said, ‘we’re going to do that,’ ‘we’re going to get you to that,’ and we believed it.”
Related: Non-opioid treatment alternatives
Some patients need to relearn basic skills, like walking. (Photo: Shutterstock)
It's been more than a decade since Becky was lying in a hospital bed with a broken neck, two collapsed lungs, all of her ribs on one side broken, and a broken clavicle. A work-related auto accident rendered her “an incomplete quadriplegic.”
“My spinal cord was damaged, but not severed,” she explained. Her left side has partial paralysis. Her right side looks normal, but she can't feel hot or cold, sharp or dull sensations.
Becky had to learn how to walk again and to function with one hand. Then, two years later, she developed burning nerve pain from the neck down. “That was the darkest time for me,” she said. “They tried all kinds of medications. I was depressed, I wasn't sleeping at night, I stopped exercising, and I stopped having any kind of positivity. It was a really, really dark time.”
Becky was subsequently diagnosed with a syrinx — a fluid-filled cyst in her spinal cord. In her case, it is essentially inoperable. Becky reluctantly agreed to go to a functional-restoration program in California, although she wondered how that could alleviate her pain.
“I discovered that pain is an experience, not a sensation. And I get to decide what it means,” she explained. “And when the fear goes away, and the negativity goes away, the pain comes down. And when my activity goes up, eventually I’m less sore and I’m better. And life could still be good.”
When someone asked what she focuses on while feeling burning nerve pain from the neck down, she responded: “You focus on the neck up. There's always something we can focus on that is OK.” She added, “If everybody's on the same page — the provider, case manager, adjuster — even if it's just one person that will speak some kind of positive into your experience, it makes a huge difference.”
Becky has an active life these days. She and her husband, Barry, have started a company to help people with long-term chronic pain.
It is something with which she is intimately familiar. “I still have the syrinx. I still have burning nerve pain from my neck down, it just doesn't have me,” she said. “I don't take any meds. I live a very good, very functional life.”
Dwight Johnson on the move. (Photo: Soule Innovations, Facebook)
Despite losing both legs from two work-related incidents, Dwight Johnson became a force within the workers’ comp community. He was tired of people looking at his prosthetic legs and decided to give them something special to see. He started creating outlandishly colored hand-painted sneakers — first for himself, then for others. These gained notice when they were worn by the late David DePaolo, founder of WorkCompCentral, at numerous industry events.
Dwight's story began seven years ago, when he picked up a staph infection while working in Hong Kong. By the time he returned to Los Angeles, his left leg was dead and had to be amputated. He returned to work with the one prosthetic leg, inspecting some of the world's tallest buildings.
Three and-a-half years later, Dwight suffered another industrial accident, leading to the loss of his other leg. A native of the Del Mar, Calif.-area beach community, he was an avid surfer, and utilized prosthetic legs to surf. He also had special legs made for running and was doing stained glass artwork for restaurants in the San Diego area.
In addition to his hobbies, the father of seven opened Soule Innovations, a business that creates brightly colored sneakers for people. He and his wife Debbie also donated the shoes to other amputees and war veterans.
Tragically, Dwight passed away in March of this year from heart-related issues, but his positivity and energy are not forgotten.
The lessons? The stories are different. But the messages from these and other injured workers are the same: Positivity, peer support and advocacy are imperative to recovery.
Injured workers need positive attitudes from everyone around them to help them heal. (Photo: Shutterstock)
“After an injury, the person dealing with us has to be positive,” Dwight explained. “We’re trying our best, but on the other end of the line, tell me everything's going to work; tell me you care. It's so important.”
The attitudes of those involved with an injured worker are vital in determining the outcome. Karen can't forget the medical provider who walked into the exam room, looked at Kenny's information and told him, “You’re as good as you’re going to get.” On the way home from the appointment, Kenny was crying in the car and asking, “This is it?” Those and other negative conversations kept Kenny in a disability mindset until his third caseworker arrived on the scene.
Becky related her experience when she was first in the hospital. “As soon as they took the ventilator tube out of me I asked, ‘What's the prognosis?’ [The doctor] just looked at me and said, ‘You’ll never be normal.’ I cried after that. Couldn't move, couldn't scratch my nose but I didn't like that answer,” she said. “I asked another doctor the next day. He smiled and said, ‘You’re going to walk again.’”
That type of positive reinforcement made a difference in Becky's attitude and ultimately, her outcome. Much of Becky and Barry's work with chronic pain patients involves reframing the message.
Nevertheless, the message must be truthful in addition to being positive. “One thing that used to really get to me is if someone said, ‘We’re going to bring you back to normal,’” Dwight said. “If I’m going to be normal, we’re going to cut everybody's legs off and then we’ll be normal. Normal for me would be impossible. It has to be positive. We all have to work on ourselves.”
Patients need advocates so they don't feel alone in their struggle. (Photo: Shuttertock)
Peer advocacy is also crucial to a positive outcome. Often the injured worker's only support is his family, and that can be volatile.
“It's a powerful journey to be a spouse of an injured worker,” explained Barry. Fear creeps in, he said, which can impede recovery. “It's easy to find yourself defaulting to that workers’ comp check that's in the mail. It's almost a feeling like, ‘you’ve got to stay injured, you’ve got to stay dependent.’”
For the employees and their families, showing support and caring can make the difference between an injured worker staying dependent on the system or recovering.
“It begins with positivity,” Barry said. “I coach family members of people going through pain, and we talk about grieving that loss. At the same time, grief is also acceptance of what you’ve lost and celebrating what you have. We spend a lot of time on that.”
Becky empathizes with her clients who are going through the pain. “We specialize in the difficult cases,” she said. “We want to give them hope, support and all they need to be self-managers instead of passive patients.”
Hearing and believing what the injured worker says is a crucial part of advocacy. In Becky's case, her diagnosis of “incomplete quadriplegia” may have expedited the care she received. But a case like Kenny's, with a questionable diagnosis, is more vague and complex. There can be a stigma attached that can leave the injured worker feeling alone and forgotten.
“If somebody's on drugs for two or three years and nothing is happening, you’ve got to stop it then,” he said. “Thirteen or 14 years is terrible. You go to these doctors and say, ‘Yes, my back's killing me.’ They write you a prescription and that's it. It's hard.”
Kenny spoke of the family-like support he received at the rehab facility as key in his recovery. For the 12 years before, he had only his wife.
“If somebody is alone and disabled, I don't even know how they cope,” Kenny said. “I was in such a stuporish state that, if Karen wasn't there or later on, when [the case worker] came into our lives, if she wasn't there, I’d probably be dead right now.”
Dwight likewise found good support from his provider. “My doctor gave me two options: ‘Put you in a wheelchair and give you enough drugs, or get up off your ass and do something.’” He chose the latter.
Kimberly George is the senior vice president, senior healthcare advisor at Sedgwick. She can be reached at firstname.lastname@example.org. Mark Walls is the vice president, communications and strategic analysis, at Safety National. He can be reached at email@example.com.