My National Stroke Support Organization (SSO) Survey has identified a critical funding crisis for community-based stroke support organizations and recovery groups. These essential nonprofits offer survivor support but lack sustainable resources. The data I gathered from this survey will inform a comprehensive report in my new book, Closure After Stroke.
Throughout this week, I’ll be showcasing more of this vital data that paints the picture of a failing stroke after care model that needs a new playbook.
In addition, with each post I’ll release some key takeaways from the survey beginning with Takeaway #1 Stroke Doesn’t End at Discharge—It Creates a “Care Gap” from this chapter in my new book.
In today’s release I’m starting with a short video to highlight the background on my why for the survey and some of my initial findings.
More Data and Mentions in this video:
Takeaway 1: Stroke Doesn’t End at Discharge—It Creates a “Care Gap”
When formal medical services end, stroke survivors and their caregivers are left to navigate a new and often overwhelming world. According to my research and advocacy over 18 years, this is the “care gap” that Stroke Support Organizations work tirelessly to fill. They provide the essential, long-term community support that the healthcare system is not structured to offer.
The services SSOs provide are practical and life-altering because they are rooted in shared experience. They run social support groups that combat isolation and improve mental health. They help survivors advocate for their needs, which is especially critical for those with “invisible” symptoms or communication challenges like aphasia, a difficulty with speech and language. They also connect families with community resources and help them understand the latest research.
What makes these organizations so uniquely effective is that they are built on the foundation of lived experience. Most SSOs are run by survivors and caregivers themselves, offering a level of understanding and empathy that clinical settings cannot replicate. They represent the patient’s perspective in a system often focused on the opinions of health professionals.
Most often survivor voices aren’t heard. Instead generic guidance often gets passed down from position statements from national conferences and ‘latest stroke breaking news’, that doesn’t carry over to the survivors real world.
We Need to Do Better. Better Than ‘Good Enough’.
More soon, chime in! I’m just getting started…
