So wrote a stroke survivor who attended my show. He went on: “I guess you got special treatment because you were a doctor, and you worked there. But what about the rest of us? How can I get help? My doctor will refer me, what do I ask for, who do I see?”
He was asking for help! Several years post stroke, he felt he had never had the support, services or treatment to recover, and alone, was back sliding from the few gains he had made on his own. Hearing how much help I got made angry but also, for the first time, gave him hope that if he could only find help, he might improve.
I felt for him. And understood. His plight is sadly, too familiar. At every show, someone asks how to get the help they need, and I have been dismayed at the incredibly lax level of rehab support they receive.
I did not get special treatment. I had to fight for most of the outpatient services I got, and it was only with the help of one colleague, Stephen Weiss, who himself had had a brain injury, that I was pointed in the right directions for services. My primary physician set up a series of assessments, and my speech therapy was through Kaiser, my insurer. But most of the outpatient rehab services, ALL those after the initial 6 months, and the ones that made the most difference long term were ones I sought out and received OUTSIDE of the medical system! Schurig Center for Brain Injury Recovery
and The Disabled Students Program at College of Marin (no longer exists, some services rolled into Schurig) were crucial, as well as Attitudinal Healing.
I wrote back telling him so, suggesting he contact the comprehensive stroke non profit in his area (on the Penninsula, Pacific Stroke Association is terrific, but there are networks around the country), and see what they can offer.
Baking as therapy, above
So it was with incredible dismay and sadness that I read a recent Morbidity and Mortality Weekly Report on Medscape on post stoke rehab. This study looked at the use of outpatient rehabilitation in stroke survivors in 2013 and 2015. The study was limited, including data from only 20 states and the District of Columbia in 2013, and four states in 2015. The study is less rigorous than some: retrospective and relies on self reporting. So there is room for error. But here is the devastating news; “Despite long-standing national guidelines recommending stroke rehab, it remains underutilized, especially in the outpatient setting.”… “Overall outpatient rehab use was 31.2 % in 2013 and 35.5% in 2015.”
You read that correctly. As of 2015, only about one third of stroke survivors get any out patient rehab!
So the audience member who wrote had the experience of the majority of Americans.
Above, Golf as post stroke therapy, offered through the American Heart Assn.
To make matters worse, there is a significant disparity by sex, race, Hispanic origin and level of education. I don’t need to spell out for you who gets less. You know. It’s the same as with all the healthcare (housing, financial resource, job opportunity etc) disparities (and as evident in images above).
Think about this. Once they leave the hospital or in-patient rehab facility, the great majority of stroke survivors, get NO further rehab services!
Yet we know people the sooner efforts begin, the greater the potential recovery, survivors can continue to improve for years, and some people require lifelong services to avoid backsliding.
So how can we be failing so many?
Our medical system is set up on the disease model not a health model. We’re pretty good at treating acute illness, not as good at longer term goals: healthy living, health maintenance and disease prevention, long term optimizing function and rehabilitation. Rehab is labor-intensive, slow and expensive with goals that may seem subjective or elusive. Rehab is often not fully covered by insurance. And if you are no longer able to work, and health insurance is tied to your job, and the issue of funding looms large.
The Medscape article noted this low percentage despite, “increasing participation in stroke outpatient rehab has been recognized as a national priority.” The authors suggested the continued under utilization, “might be related to lack of patient access to outpatient facilities, ineffective referral from healthcare providers, high out-of-pocket costs, lack of health insurance coverage, or lack of knowledge and awareness of benefits of outpatient rehab for stroke survivors.” Note that at least 2 of these factors point to failings on the part of health care providers, and 2 to immediate financial considerations. Stroke Rehabilitation is multidisciplinary, but even so, multiple providers fail to secure appropriate follow up.
But how can we throw away so many people? Which is essentially what we are doing if we provide no long term rehab services. Stroke affects approximately 750,000 people per year in United States, people of all ages, from fetuses to the elderly, though fewer than 25% of strokes occur in those under 65.
Answer: WE CAN’T! Yet we are!
The Medscape article suggests interventions, such as “increasing coverage for outpatient rehab services by health insurers, reducing copayments, extending rehab clinic hours to improve accessibility availability and implementing standardized assessments by healthcare professionals to guide appropriate referrals to rehab at hospital discharge.” They also suggest increased education of stroke survivors about outpatient rehab opportunities available in their communities, and reduced barriers related to transportation and time (critical for those with mobility limitations).
I will remain ever grateful for Stephen, the network of providers who helped me and the organizations that provided support.
After my word salad resolved, I detailed my residual losses to the Chief of Neurology.
“There’s nothing wrong with you that isn’t wrong with someone your age.”
I responded, “But none of these things were wrong with me the day before my stroke.”
He shrugged. “You’re brain damaged now, Diane. Better get used to it.”
I fired him.
I urge you to do the same if you or someone you love gets a response like that.
Rehab helps, long-term rehab maybe critical to your recovery! Don’t let anyone tell you otherwise!
Turn to everyone you know and ask for help. Remember, brain injuries (including stroke) are more common than HIV/Aids, Breast Cancer, Multiple Sclerosis and Spinal Cord injury COMBINED!
Encourage you to share this information with your loved ones or anyone you know who has been affected by brain injury. Together, we can each help insure stroke survivors get the resources they need to thrive. (And help humanize medicine in the process.)
"...it's in the nature of the human being to face challenges." Neil Armstrong. 1969.
Let us all join together to be the solution.