People with a chronic illness are not, and should never be treated as, second class citizens. We deserve the same health care as any able-bodied citizen around. We should not have to wait weeks to see our Family Doctor. We should not have to be seen in Emergency Rooms, tying up precious hospital resources for routine things. We should not have to wait years (in some cases) for operations to make us mobile or help us regain what we have lost to disease.
I must say that once I started speaking up to my Family Doctor about what was going on in my life health wise, he took immediate action.
Here’s how it went: I made a list of each and every symptom that I had over the past 13 years. I detailed what happened, how the symptom started, any issues arising from the symptom and whether I sought medical attention for the symptom. I had a list a page long of parasthesias, dysphagia, dizziness, numbness, IBS and so on and so on. I made an appointment and simply handed him the page to read. I said nothing.
He reviewed the paper and then asked pointed and considered questions. Seeing all the symptoms together on a page and not just spread of 100 Doctor visits had an immediate impact. Tests were arranged - one was repeated. Blood was drawn. EMG studies were done. Our mission was to rule out any underlying cause for some of the symptoms that could be diseases on their own.
Once the results were back, and everything but carpal tunnel syndrome was ruled out, an appointment was scheduled with a Neurologist. The appointment is coming up in December. And it was made in August.
Though that seems like a long wait, I’ve heard horror stories. Patients who were seen by a specialist who determined that they needed a knee replacement, for example. And the wait time for surgery was two YEARS! Imagine - two years of your life on hold because you need a knee replacement!
A study by the New York Commonwealth Fund recently found that 60% of Canadians surveyed who had a chronic illness waited more than four weeks to be seen by a specialist. A further 42% said that their wait time was more than two months, putting Canadian behind the citizen’s of seven other countries.
The study was published in the journal Health Affairs, published online this month. The abstract is as follows:
This 2008 survey of chronically ill adults in Australia, Canada, France, Germany, the Netherlands, New Zealand, the United Kingdom, and the United States finds major differences among countries in access, safety, and care efficiency. U.S. patients were at particularly high risk of forgoing care because of costs and of experiencing inefficient, poorly organized care, or errors. The Dutch, who have a strong primary care infrastructure, report notably positive access and coordination experiences. Still, deficits in care management during hospital discharge or when seeing multiple doctors occurred in all countries. Findings highlight the need for system innovations to improve outcomes for patients with complex chronic conditions. [ Health Affairs 28, no. 1 (2009): w1-w16 (published online 13 November 2008; 10.1377/hlthaff.28.1.w1)]“
Moral of the story - be prepared. Use your voice. Only YOU can be the driving force in your own health care.