Steve Bingham, Co-Owner of the Internet Hepatitis B Information and Support List (www.HBList.org)
Brad, a member of our HB-L online support group writes, "I have to say that sometimes I am a little puzzled with the questions that people post to this listserv and the fact that they don't call their doctors instead...I just think there are times when we really need to bring things to our doctor's attention, and there are some things that are best not left to lay people, no matter how well educated or intended."
Brad makes a good point that we shouldn't bypass doctors, and like Brad, some people are uneasy with patients giving advice to other patients in support groups. In our defense, we do tell our subscribers to type IMO ("in my opinion") when giving advice, and we have other disclaimers. Most of the questions on our listserv come from people who have already been to their doctors. They may come to us because: 1) They find it hard to access their doctor for follow-up questions - sometimes patients feel like stalkers, as they try to corner doctors and nurses to get information; 2) They can't afford proper healthcare; or 3) Their doctors aren't HBV-savvy.
Many doctors welcome patients who are well-informed and willing to help educate other patients living with a chronic illness. They know that by working together, patients and health professionals can find the best solutions to care and treatment issues.
In the U.K., the National Health Service (NHS) introduced the Expert Patients Programme (EPP) in 2002 to help people with long-term chronic diseases to develop new skills to better manage their condition on a day-to-day basis. According to the EPP website, NHS analysts predict that "the U.K. could expect people who have gained self-management skills to make around 40% fewer visits to their GP's and 17% fewer visits to outpatient clinics...[and to] also expect 50% reductions in length of stay in hospitals, and days off of work because of illness." (www.expertpatients.nhs.uk/about_faq.shtml)
The vision of shifting some of the medical responsibility to the patients may reflect the fact that the predominant pattern of disease in this country has shifted over the past 50 years to one of chronic rather than acute illness.
In my humble opinion, research over the last two decades shows that people living with chronic illnesses are often in the best position to know what they need in managing their own conditions. Now we must encourage them to use their insight towards developing valuable "self-management" skills to improve their quality of life as well.
Best Wishes,
Steve
BInformed, Winter 2006.
