After seeing a segment on an Australian current affairs program regarding an initiative where an 'experienced' patient sits in the doctor's surgery and provided advice to 'inexperienced' patients, I have decided to offer this idea to my dermatologist.
From my experiences of visiting dermatologists all my life, I have found, that although a doctor knows about the medical aspects of a condition, they have little first hand experience about how a patient lives day to day, and what their life entails. To overcome this problem, and perhaps to move aside from medical jargon in the doctor’s surgery, I believe there should be an initiative whereby an ‘experienced’ patient with the same or similar condition either sits in with a doctor and their patient. There could also be a meeting type arrangement where people can share their experiences and a doctor can provide a medical analysis.
A medical condition is not only about being sick. It is about living, and getting through life’s encounters- whether it be environment and weather, school, work, general society or simply managing the condition. A doctor cannot always provide advice on these aspects, they can rarely empathise without actually having the condition. This is why I believe it is important that a patient receives advice from other patients as well as a doctor.
Upon regularly visiting www.ichthyosis.com,
I have found that the community of the bulletin board has provided me with some insight, and has often offered solutions to some of the problems I have forgot to ask doctors. Sometimes when I have read that another ichthyosis sufferer has experienced something that I have too, it is like revelation, I think to myself, “Wow, I thought I was the only one...”.
This initiative could provide patients who are relatively unaware of a condition with a sense of hope, giving the message that you can lead a ‘normal’ life no matter what condition you have. Patients could share hints and anecdotes with each other. It is important for patients to understand how to cope with certain situations in life, and to maintain a sense of humour. Often a doctor cannot advise on how to cope or see the funny side of living with any condition- it takes empathy.
Of course, by implementing this initiative, there are ethical and legal factors to consider. These include patient confidentiality- does a patient want someone other than their doctor knowing their medical problems?, and the delivery of non medical advice- certain remedies may suit some people, but could have harsh effects on others.
I have yet to complete it, but I will present it to my doctor on thursday, will let you know what he thinks.