In an article recently published*, it was shown that patients on dialysis and patients receiving care for transplants expressed a need for increased patient-centered education and mental health resources. This is the very MISSION of the Carlisle-Williams Foundation (CWF).
As a former dialysis patient, I discovered that there is a lack of patient-centered education and a heavy reliance on patients doing the research and finding information for themselves. This does not work well for people experiencing the effects of dialysis. CWF's main vehicle of support includes the very patient-focused information patients are seeking and is sent direct to the patient. Further, our social media work - including this website - supplements that information with continuous, updated, relevant information.
The article goes on to say "researchers identified seven themes that included many stressors due to COVID-19 such as postponing medical visits, limited accessibility to medication, difficulty in receiving up-to-date and patient-focused health information, difficulty in receiving dialysis supplies, delays in medical appointments, losses of health insurance and income, and increased vigilance to avoid contracting the virus." The Carlisle-Williams Foundation is a strong supporter of at-home dialysis - hemo or peritoneal as this greatly reduce some of the highlighted issues identified by the researchers. Additionally, we provide information on telehealth and provide up to date information on Medicare-covered expenses for telehealth as dialysis patients must go on Medicare.
Finally, the article states “The pandemic created both high levels of mental health strain for dialysis and transplant patients and difficulty coordinating care by the health-care community. It provided insights into the psychological and practical challenges immunosuppressed patients face and the actions they take to protect the safety of their health, with or without a pandemic.” “The gaps in support services identified need to be explored so that health information is made readily available faster and addresses patients’ emotional needs.” This Foundation is currently holding its annual online auction fundraiser with the intent to use those funds to provide emotional wellness programs for dialysis patients free with donations accepted.
Follow this blog to stay up-to-date on issues surrounding dialysis and improvements that are being made both in the industry that and by this Foundation.