Empowering Recovery from Catastrophic Injury
Navigating Misinformation and Finding Effective Solutions
Recently, I found myself reflecting on the notion of "snake oil salesmen" as I observed a new client navigating their recovery from a spinal cord injury. In their quest for healing, this individual encountered a maze of contradictory advice regarding what recovery was achievable, leading to confusion about their journey. What to trust? Who to believe? What action makes sense?
Some individuals naturally know how to focus on what they can control while releasing the rest. While the future is unpredictable, carefully examining controllable factors, likely outcomes, and strategies to address these variables offers the best chance for success. This approach considers the chain reaction: "If I do X now, then Y will follow, leading to Z." The wise person sets out to carefully define the unknowns in that chain reaction. Carefully filtering the advice offered is a sound step.
Striving to recover from a spinal cord injury is not just a physical task with physiological demands. It is emotionally stressful, and this understandably overwhelms some and leaves them vulnerable to persuasion by the unscrupulous. In many instances, we make things considerably more draining and frantic - and impair our recovery and cognitive function - by adding emotional stress. This emotional stress makes things worse.
Spinal cord injuries
A spinal cord injury is a transformative event that can drastically alter one’s life. Recovery may require adjustment to a new reality where certain functions, such as walking, that were once taken for granted become impossible. While some may view this disability as an insurmountable obstacle to a fulfilling life, the path to recovery is deeply personal. Should one strive to regain lost abilities or embrace a new way of living and "move on"?
Just as each injury is unique, so too are the attitudes and beliefs of those affected. The initial priority of the health service after such an injury is achieving medical stability. Subsequently, there may be opportunities to regain some lost function, after which, utilising assistive technology to adapt to lost abilities often becomes the primary objective. But how do we know what is possible in terms of recovery?
In the UK, the National Health Service (NHS) faces significant challenges in delivering comprehensive lifelong physical rehabilitation for individuals recovering from catastrophic injuries. While the NHS excels at providing essential medical care immediately after an injury, the rehabilitation process can often feel long and overwhelming. It's important for patients to take an active role in shaping their recovery journey. The system tends to emphasise acceptance of disability and promotes this mindset early on. While this approach may suit some individuals, others may find it difficult to navigate. and accept emotionally. We have had clients say that their past contact with clinicians "killed hope". When this happens, clients set out in search of miracles and become vulnerable to misinformation and even fraud.
Snake oil and other remedies
If something seems too good to be true..it probably is
The notion of a snake oil salesman originated in the late 19th and early 20th centuries in the United States. It refers to charlatans promoting and selling dubious remedies or products with exaggerated claims of effectiveness. The phrase traces its origins to Chinese labourers who came to the U.S. to work on the Transcontinental Railroad, bringing traditional Chinese medicines, including snake oil derived from the Chinese water snake. Known for its high omega-3 fatty acid content, this oil was believed to possess anti-inflammatory properties and was used to alleviate joint pain.
Witnessing the success and popularity of this remedy among Chinese labourers, American entrepreneurs began to market their own versions of snake oil. Unfortunately, these products often contained little to no snake oil, typically mineral oil, turpentine, red pepper, and other substances with minimal medicinal value.
One of the most notorious snake oil salesmen was Clark Stanley. In the 1890s, he promoted "Stanley's Snake Oil," claiming it offered miraculous healing properties. However, an investigation by the U.S. government in 1917 revealed that his product contained no snake oil whatsoever; it was primarily composed of mineral oil with a few other ingredients. This revelation resulted in Stanley's fine and his product classification as fraudulent.
The exposure of such fraudulent practices led to the term "snake oil salesman" becoming synonymous with someone who deceives others by selling fake or ineffective products, often using persuasive but misleading language and tactics.
Sadly, from time to time, we see persons who fall victim to modern snake oil salesmen who promise miracles to persons recovering from a spinal cord injury.
No perfect products
Misinformation and a lack of knowledge can lead to numerous challenges. Many individuals leave the hospital and purchase various pieces of equipment without a clear plan or understanding of what will truly benefit them. It's all too easy to assume that the latest technology will provide a solution—and while it might—it's probably more common to wake up one day to find your home cluttered with devices that don't work well together and fail to help you achieve your goals or expectations. To prevent such issues, seeking reliable guidance and creating a realistic plan is essential.
People can get excited about new medical advances and technology, but some of the most effective technologies, such as electrotherapy and exercise methods, have been around for a long time. Despite this, clinicians are still not always well-informed about them, so it is hard for their patients to expect to benefit from their application.
We often remind clients that no product is perfect. While some products may represent therapeutic interventions, be classified as regulated medical devices, and have undergone extensive safety testing, they may not be suitable or effective for every individual patient. As a business, we prioritise ensuring that the products we recommend are safe and effective for our individual clients. We also strive to clarify what outcomes can realistically be expected from using such products.
When products are assistive technology, they are designed to compensate for some lost function. Again, there is a need to ensure that such a product will be safe to use, and in these cases, it is relatively easy to see what goal can be delivered from a product's use. The biggest pitfalls can arise when clients have a universe of products that don't work well together and have incompatibilities.
Conclusion
In conclusion, the journey to recovery from catastrophic injuries is fraught with complexities and challenges that require a nuanced understanding of both medical options and assistive technologies. While the initial response from healthcare providers is crucial for achieving medical stability, the long-term rehabilitation process necessitates a proactive approach from patients. With the prevalence of misinformation and the risks posed by unscrupulous vendors, it is imperative for individuals to seek credible guidance to navigate their recovery. Clinicians and clients must work collaboratively to explore realistic and effective solutions tailored to individual needs. By fostering open communication and informed decision-making, we can empower patients, helping them reclaim autonomy in their rehabilitation journey and mitigate the impact of potential setbacks from fraudulent practices. Only then can hope be effectively rekindled, allowing individuals to strive for a fulfilling and meaningful life beyond their injuries.