The headache disease community needs your help! To gather information to help improve patient access to treatments, advance research, and decrease stigma of headache diseases, the Coalition for Headache and Migraine Patients (CHAMP) is conducting a survey. I’m a CHAMP member and can tell you that the coalition is doing great work for people with headache diseases. We can be even more effective if we hear from more patients about their experiences.
In order to do this important work, we need to hear from more voices. This is where we’re asking for your help. You can:
- Take the anonymous survey! If you live with headache, migraine or cluster disease, we want to hear your experience. The deadline is Sunday, Feb. 29.
- Share this with anyone you know who lives with a headache disease
The survey is hugely important and takes about 15 minutes to complete thoughtfully. I promise your time will be well spent. At the end of the survey, you have the option to enter to win a $25 Amazon gift card.
Complete the CHAMP survey by clicking here!
“How do you create awareness about migraine disease and headache disorders as a regular patient with a life full of other obligations?” was the question for the May 2012 Headache & Migraine Disease Blog Carnival. Though I didn’t get a post written in time to be included in the carnival, I have been mulling the question over. I was surprised to discover myself coming back to a very simple answer: talk about migraine.
Advocating for folks with migraine doesn’t require a fancy degree, having a blog, or devoting tons of time to the cause. All it takes is for people with migraine — and those who love us — to speak up about what migraine really is whenever the opportunity arises. This means not dismissing a migraine as “no big deal” and not shrugging off when someone says migraine is “just a headache,” but explaining that this is a neurological disorder that affects the entire body.
Explaining that the autonomic nervous system — which is responsible for all the processes the body does without obvious input from the brain, like breathing and digestion — goes haywire and that all five senses are on super-high alert are illustrative for non-migraineurs. The list of little-known migraine symptoms and weird migraine symptoms help, too.
How do you talk about migraine to raise awareness of the disease?
Dr. Christina Peterson, headache specialist and founder of HEADQuarters Migraine Management and Migraine Survival, commented on the Effective Advocates post with great advice for all of us:
There is no excuse for doctors or other health care providers to be jerks. However, please be aware that under current HIPAA laws we are somewhat restricted regarding how much information we are allowed to release to anyone who is not the patient without the patient’s written permission. If you are in the room, obviously there is a level of implied consent–unless there is reason to suspect an abusive relationship, which we are also obligated by law to report. And…between 1/5 to 1/3 of women reporting to Emergency Departments have been victims of some sort of sexual or domestic violence or abuse. So–it becomes complicated.
In today’s deteriorating health care environment, the Emergency Department has become something of a war zone, inundated by trauma victims. And with the general lack of awareness and poor attitude regarding the headache sufferer, we tend to fare poorly in the Emergency Department and are treated, at best, as a nuisance, and more often, as a drug seeker. This is why I try to give my patients the tools they need to manage their headaches on their own without resorting to Emergency Department treatment unless they have become dehydrated and require IV hydration.
If you do go to an ER, take an advocate who can remain calm but persistent, while keeping these points in mind–and someone who can educate regarding headache/migraine wouldn’t hurt!
Another point: if you think you might be too impaired to call your physician’s office during a headache, and you are going to want a family member to call on your behalf, please sign a consent form for that person to talk to the physician when you are in the office. We really are not trying to be difficult about this–it’s federal law intended to protect your confidentiality.
Savvy patients arrive at their doctors’ offices, printouts in hand and ideas about treatment in mind. Whether they want to try a new therapy they’ve read about, question their diagnoses or avoid a drug because of its side effects, these patients have ruffled some feathers in the medical establishment.
In today’s Washington Post, Marc Siegel, an internist and associate professor of medicine, describes his transition from being “a card-carrying member of the group of doctors who resent know-it-all patients” to having “an appreciation for patients who inform themselves.”
According to Siegel, instead of being in charge, “a physician is most effective when he or she isn’t defensive, but acts as an interpreter of information and guide of treatment, leaving the ultimate control to the patient.”
In support of a cooperative relationship between patient and doctor, the article examines the benefits that self-informed patients enjoy. Like higher satisfaction with treatment and, as several studies indicate, better outcomes.
Just what we wanted to hear!