By Robyn Woidtke, RN, RPSGT
We all need help and support during medical situations that impact our and/or our loved one’s life. During difficult times it is easy to feel vulnerable, alone, afraid and uncertain as to what lies ahead. I do not think sleep disorders are any different from any other chronic condition, but it may be that absence of appropriate sleep or a sleep apnea diagnosis is still not considered significant, therefore, advocacy may not be seen as a necessary component for our patients.
It could be that if we assume an advocacy role, maybe not as a job, but integrated into what is done on a daily basis, this could provide the necessary support to move patients toward a healthier life. I often wonder how many patients just give up because of lack of support?
I recently heard a lecture at the California Sleep Society meeting from Dr. Tyler from Kaiser Permanente on how many patients fall off the radar, and how important it is to find them and get them back on track for treatment. Perhaps if we utilized sleep patient advocates, we could change the trajectory of lost patients.
Do we need patient advocacy in sleep health? According to Gerber (2018) “ Advocates defend patients’ rights and interests and assure the safety of those who can’t advocate for themselves. This includes patients who are children, unconscious, mentally ill, illiterate, uninformed, or intimidated and fearful of healthcare professionals”. Many of our patients may be these patients. (SIDE BAR Interesting article)
Patient advocacy can play a role in easing some of the burden that an individual may be experiencing. So, what is patient advocacy? The concept is pretty simple, helping people through the fragmented and often confusing healthcare system as it relates to their condition.
A patient advocate can assist the patient with condition specific education, help to track treatment and follow on care or may work to secure needed social services or financial support. A good advocate should be knowledgeable about their specific area of health and what resources are available. According to an article in Modern Healthcare News, an advocate may also be accessed to create the linkages between the many specialties and care coordination that patients may require as part of their journey. As an example, there are patients who have a newly diagnosed cardiology condition who also have sleep apnea. These patients may need some additional support and communication between specialties.
An additional role of advocacy is working to create policy that support patients or protect the population. Such advocacy might relate to drowsy driving laws or policies that bar employers from discriminating against patients with sleep disorders. The AASM created the American Alliance for Healthy Sleep, a component of which provides for policy action. Also, of note is the National Sleep Foundation and the American Sleep Apnea Association, both of which work to increase awareness, education and support changes to public policy which support patients with sleep disorders.
Other resources that are aligned with patient advocacy is the National Patient Advocacy Foundation. This could prove to be a good resource for collaboration for sleep disorders.
In summary, sleep disorders patients need advocates on an individual basis as well as advocating at a national level to protect the public health. I am a lover of quotes and one of my most recent favorites is from Anne Frank “How wonderful it is that nobody need wait a single moment before starting to improve the world.”
If your organization is considering adding a patient advocate, say yes! If not, take a few minutes each day to see if there is someone you should be contacting.
Thanks for reading!