Locating Spinal Cord Injury Healthcare

Posted by Nurse Linda in Life After Paralysis on September 02, 2020 # Health

Finding a healthcare specialist that is right for you can be a challenge. You may already be a patient of a spinal cord injury specialist, which is a good start. However, many people find it difficult to locate someone with specialty knowledge close to home.

There are several arrangements that people have. Some will have one healthcare provider that cares for all their needs from specialty spinal cord injury care to common colds. However, with the need for specialty care growing and numbers of providers becoming smaller, many rehabilitation specialists have opted for treating only spinal cord injury-related issues with general health maintenance provided by a general practitioner.spinal cord

If this is your situation, be sure the two healthcare professionals and any other specialists that you see can communicate freely with each other. The traditional method of communication used to be by letter summarizing your visit from one provider to another. Although still a satisfactory method, it can be slow, or information can be overlooked. Today, medical records are maintained in computer files. If you stay in one system, every provider will have immediate access to your medical visits, tests, and lab results. Each provider is signaled when a new posting is made. It is not unusual for payors to connect with one system in your area, which helps as well.

Generally, individuals will stay with the provider assigned in the rehabilitation setting for specialty care. If you need to see another provider for a different need, such as a urologist, the specialists usually have a working relationship with each other. This can enhance communication as well as the ability to coordinate care. The referring specialist will know about the tests and procedures that you will have with the new specialist. Coordination is typically fluid.

Many individuals are seeking specialty spinal cord injury care in their home location. It may be too far to travel to the rehabilitation hospital routinely, or perhaps you are just looking for a change. Urban areas may have spinal cord injury specialists, but smaller or rural areas generally do not. There are some resources you can use to help locate an SCI specialist.

Call your payor and ask for your case manager. Individuals with catastrophic illness or injury are typically automatically assigned. Hopefully, you already know this person, but if not, call the number on the back of your insurance, Medicare or Medicaid card and request a case manager. This is a service provided by the payor to assist in care management within the payor guidelines.

If you have not been assigned to an insurance case manager, it is time to request one. They facilitate services. On the top of that list is locating medical care providers. They will recommend providers within your healthcare plan, so payment is as you plan states. They can also approve out of network services as needed if the desired service is not within your network. There might even be a choice of several candidates. If there is not an SCI specialist in your network, ask if they will waive the out of network fee to get the care you need. The SCI specialist may not be a physiatrist (a physician with extensive education in physical rehabilitation). Still, it might be a neurologist, a gerontologist, or a general practitioner who has relevant knowledge.

If you are a veteran, contact the VA. There are individuals there that make the same connections as the insurance case manager. If there is not a VA center in your community, they may make a referral to a community healthcare provider or connect you with a VA spinal cord injury specialist in addition to a local healthcare provider.

Call an academic medical center in your state that has a Physical Medicine and Rehabilitation educational program. Their alumni office will have a listing of graduates and where they are working. There might be someone close to where you are located. You can also contact spinal cord injury specialty centers to see if any of their residents have graduated and are seeing patients close to you.

Contact the Christopher and Dana Reeve Foundation Paralysis Resource Center. They do not recommend but may have the name of a specialist if there are some in your area. Also, the Peer Mentor group can connect you with a community member close to where you live that might have suggestions of resources. Use the support of the Foundation to educate yourself so you will be better able to work with a provider. These information sources will help you organize your thoughts to ask questions for your care needs.

There are other ways to locate a specialty physician. If you know someone in your community with a spinal cord injury, ask who they see and how they relate to them. Remember to consider the personality of the person you are asking. You might have different expectations of your provider. Be open to trying someone as your healthcare preferences might fit perfectly with the provider. SCI community message boards can also be helpful.

Use all your resources to locate a spinal cord injury specialist. Registered nurses in your community have contact with all sorts of healthcare professionals. They ask patients about their experiences with healthcare providers. Registered nurses are professional collectors of information. They have a good understanding of the personalities and qualities of providers. Typically, they will know of providers that are either interested in spinal cord injury or will take the time to provide you with the best care as they explore the specialty.

Before seeing an unknown provider, check their references and ratings. I recently had the experience of seeing a physician specialist. The ratings were great for diagnosis but at the bottom for bedside manner. My goal was a diagnosis, and I am indifferent to obnoxious personality if the technical aspects of care are correct. Just as promised, I did get an excellent diagnosis of an atypical problem. The bedside manner was just as described. My regular healthcare provider took it from there. Would I return to the specialist? Hopefully not. The technicality of the visit was good, but you also need someone who will listen to your symptoms and concerns. Finding a good match in personality is important if you are going to have a long-term relationship with your healthcare provider.

You do have a right to a second opinion. Your healthcare provider should not be opposed to this request. Most will welcome a ‘second set of eyes,’ especially if you are dealing with a difficult problem. If your provider is unable to suggest a person for a second opinion, you can turn to your insurance case manager for suggestions.

Finding other healthcare providers can be managed in the same way as locating medical care. You might be looking for home health services, therapists, nutrition education, a psychologist, social work, or any other healthcare needs. The methods of locating services are the same. Start with your insurance case manager as they will supply names and options that are covered within your healthcare plan.

Occasionally, people do not mix well. It may take several attempts to find medical care that is consistent with your personality and preferences. Finding healthcare providers is not establishing a friendship but finding a working relationship. If you have been to many, many providers but are not getting the results you desire, take a step back, and look at your situation. Is your problem one that will take time, needing attempts at multiple treatments to find the right answer for you, or perhaps it is not the problem that you think it is. Sometimes taking a step back and taking in alternatives is an answer to an issue. None of us what that answer, but sometimes, it is as far as medicine has gotten. Keep up with what is going on in healthcare, and the answers will become apparent as developments increase and improve. Nurse Linda

Pediatric Consideration:

Finding specialty pediatric spinal cord injury care can be even more of a challenge due to the small number of providers. You might have better results by looking at providers who care for different but technically similar diagnoses such as pediatricians that specialize in other neurological issues such as movement disorders or cerebral palsy. If there is a pediatric specialty hospital in your community, it will be easier to find compatible services.

You might need to take your child to a specialist such as a urologist, but the only urology provider in your community is an adult provider. If you need to use adult providers, inquire about how they will accommodate your child. Often this is not thought about until you bring it up. They will need appropriate size equipment. The outcome parameters of the studies will be different. Check those accommodations for the needs of a child with spinal cord injury, such as room temperature regulation, pressure reducing surfaces, etc.

A key point should be how they will accommodate the developmental level of your child. For instance, will they distract your child during the procedure to reduce trauma? Will you be able to stay with your child? How will any special needs be handled? What will emergency care be provided should it be needed? Do they have emergency equipment and medications on hand for your child’s age and size? What will the follow-up care be? If you have any questions, ask it. Get specific answers. If you are told it is taken care of, ask how it is being done. Your questions will prompt their thinking about what will be needed to care for your child properly. Nurse Linda

Linda Schultz, Ph.D., CRRN, a leader and provider of rehabilitation nursing for over 30 years, and a friend of the Christopher & Dana Reeve Foundation for close to two decades. Within our online community, she writes about and answers your SCI-related healthcare questions in our Heath & Wellness discussion.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.