Countless studies have shown that individuals with spinal cord injury face challenges accessing the same level of primary care as able-bodied individuals, which can result in unmet health needs.
In response to this growing concern, the American Spinal Injury Association (ASIA) has created a comprehensive 19-part guide specifically created for physicians unfamiliar with healthcare needs associated with SCI. Topics range from the specifics of autonomic dysreflexia, pressure sores, cancer screenings and immunizations, to hypertension and even pediatric spinal cord injury specific health issues. Each topic is presented with a scholarly article, with helpful patient talking points.
The numerous medical conditions related to spinal cord injury can be overwhelming because there is so much to look out for. The challenges are numerous too – from finding doctors’ offices that are wheelchair accessible, scheduling appointments as needed, arranging transportation, taking time off work – all are more difficult with SCI.
To illustrate these specific challenges, we interviewed Vicki Kowaleski, who was injured in a diving accident that left her with quadriplegia and at the age of 22, still faces issues after 30 plus years of living with paralysis. “One problem I had from the beginning was taking my health seriously and following through with various appointments with various doctors,” she says. “At this point in my life, I have a primary care doctor, cardiologist, physiatrist, urologist, gastroenterologist, podiatrist, ophthalmologist, optometrist, wound care doctor and a gynecologist.”
Another barrier to healthcare is inaccessibility. For people living with spinal cord injury, this begins with the lack of accessible exam tables at doctors’ offices. Vicki points out, “The exam table is never long enough or wide enough and sometimes too high. If they would put a hospital bed in one of their rooms along with a Hoyer lift, that would be wonderful!”
For women, going to the gynecologist is even more difficult than usual because it is so difficult to get on and off the exam chair. “It does drop down even with my wheelchair — but it is hard and uncomfortable. Two nurses have to hold my legs,” Vicki says.
One simple task doctors do not consider an obstacle is the ability to change into a patient gown. “I have to bring my husband with me to appointments so he can help me get undressed then dressed after the appointment. So, for me it’s mostly the inconvenience of getting dressed and undressed on chairs that are uncomfortable and difficult to get on and off of that make it challenging for me to go to appointments. At least the dentist allows me to stay in my wheelchair because I have a power chair that tilts back,” she says.
And at the hospital, doctors and nursing staff are sometimes unfamiliar with how long a bowel program takes each day for someone with quadriplegia. “It’s often difficult to get personal care needs taken care of in a timely manner,” Vicki says. “Lots of times when in a hospital room – my bowel program wasn’t attended to until much later in the day.” I am a good advocate for myself in that I will let nurses and staff know that I would like to get cleaned up and they promise they will make time but things get away from them. It becomes especially difficult when I need to go to the bathroom (#2). Nursing staff is not allowed to do certain types of bowel programs. That is a huge issue if you are in the hospital for more than two days!”
According to Vicki – after 30 years she has learned that the most important thing is to be an advocate for yourself and to have clear communication with your healthcare team. “It’s helpful to have all of the doctors a person works with communicate with each other. I have always worked from that perspective, teaching my doctors about my spinal cord injury and encouraging them to team.”
Doctors and patients alike can read and share the 19-part guide here to provide guidance for preventive healthcare and ensure maintenance measures for physicians managing individuals with SCI.