Thursday, May 13, 2010

Expert Patient AKA Chronic Disease Self-Manager

I often get emails from newly diagnosed folks who are overwhelmed with their diagnosis of a "chronic disease". They feel at a loss over how to best interact with their doctors, family and friends.

Research is very clear that becoming an "Expert Patient" as they are called in the UK or a "Chronic Disease Self-Manager" as we call them here in the US is the absolute best way to maximize your effectiveness in "managing" your chronic disease.

The better YOU can articulate your symptoms and IN GREAT SPECIFICITY document how they impair your normal daily living activities, the better you can become an "Expert Patient" and partner with your dr on the best "intervention mechanisms" to improve the quality of your life.

If you email me I can send you a free ebooklet that I recently did that gives you advice about becoming your own Self-Advocate - EP - or, as we call the person here in the US - A "Chronic Disease Self-Manager".

Here's a UK definition of EP that I recently found.

"An observation often made by doctors, nurses and other health professionals who undertake long-term follow-up and care of people with particular chronic diseases like diabetes mellitus, arthritis or epilepsy is 'my patient understands their disease better than I do.' This knowledge and experience held by the patient has for too long been an untapped resource. Research and practical experience in North America and Britain are showing that [b]today's patients with chronic diseases need not be mere recipients of care. They can become key decision-makers in the treatment process[/b]. By ensuring that knowledge of their condition is developed to a point where they are empowered to take some responsibility for its management and work in partnership with their health and social care providers, patients can be given greater control over their lives. Self-management programmes can be specifically designed to reduce the severity of symptoms and improve confidence, resourcefulness and self-efficacy."
Note: bold not part of citation; added for emphasis only.

Here is an Outstanding website resource that has an excellent article about becoming an "Expert Patient".

The key idea to keep in mind is that the more you know what is going on with you the better you can help your health care team come up with ways to increase your quality of life.