Finding the Right Healthcare Team
Last updated: February 2022
There are many different providers who treat spinal muscular atrophy, but certain factors like location, insurance, access, and cost can present challenges.
It is important to find providers you are confident in who allows you to feel comfortable. In order to receive the best care, we broke down what to consider when choosing a healthcare team.
Create a team
Because SMA can affect different areas of the body, it can be helpful for adults with the disease to choose a team of healthcare professionals from multiple disciplines.
A team can help manage symptoms, progression, and complications related to aging.2 Your healthcare team could include a neurologist, pulmonologist, orthopedist, physical therapist, nutritionist, and a mental health professional.1,2
The team could also include a central coordinator who communicates with other providers.
Check out provider qualifications
To find a qualified doctor, research local providers’ educations, training, certifications, and knowledge of SMA.3 Because SMA is rare, not every doctor is an expert in it.
It is worth the research to find professionals who are capable of taking care of your healthcare needs, be it breathing issues or finding medication.3
Specialists can be difficult to find, so you may need to travel to an area that has more medical resources.
Consider provider experience
The more experience a provider has with SMA patients, the better equipped they are to understand your individual needs. Some questions you may consider asking a provider include:3
- How long have you worked in your field?
- Have you treated other patients with SMA?
- Do you have any additional training to support treating people with SMA?
- What challenges have you encountered treating people with SMA, and how did you overcome them?
Match philosophy of care
Get a better understanding of how a doctor perceives their role in your care to make sure you are compatible. It can be valuable to ask about their treatment approach. Look for doctors who will listen to and respect your input when it comes to treatment and care options.3
Some questions you may consider asking include:3
- How are treatment decisions made?
- Do you provide integrative therapies? If not, are you comfortable with me seeking them elsewhere?
Think about communication
The quality of communication can make a big difference in care. Look for a provider who can effectively and clearly explain your medical situation.
You may also want a doctor who will talk directly to you rather than to a caregiver. Access can also be valuable.
Some providers use email or online portals to communicate with their patients. Telehealth appointments could also break down barriers to care.
Check your insurance coverage
Most health plans have discounted rates with certain doctors and hospitals that are in-network. To avoid paying more, call your insurance provider or search to find doctors who are in-network.
Ask for referrals
Many people feel more comfortable visiting a healthcare provider who is recommended by a doctor, family member, or friend. Talk with friends and fellow SMA community members about therapists and providers they have received treatment from.3
Prioritize your comfort
Your healthcare team members and their staff should be people you trust, rely on, and feel comfortable with. Some questions you may want to consider include:
- What is the office environment like?
- How long is the wait for appointments?
- How far in advance do you need to make appointments?
- Does the provider listen to my needs and concerns?
- Am I comfortable discussing a range of topics with this provider?
- Does this provider respect my decisions?
- Are my questions being answered?
- Do I feel safe and confident under this provider’s medical care?
Have you shared your SMA diagnosis story with us yet?