A proposal to my doctor

Posted by: Carly

A proposal to my doctor - 11/28/00 02:49 AM

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.

Here goes:

Doctor-Patient Initiative

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.

Posted by: Lisa Z

Re: A proposal to my doctor - 11/29/00 11:45 PM

Carly, that's an excellent idea!! I saw a little girl about 15 years ago with lamellar @ UCLA & for the first time in my life I realized why people stared. I went outside & cried. I knew what she would be facing but I also new what promise life held. I cried because her mother had given her up & she was in foster care. I don't thinnk I would have been as well adjusted as I am without my mom's love & support.
If that young lady reads this I hope you still have the glowing smile & joyfull inquisitiveness that you had that day.
Posted by: Carly

Re: A proposal to my doctor - 12/01/00 03:02 AM

Woo hoo..guess what?

I showed it to my doctor, he said that they are currently running a program similar to my suggestion in Melbourne, and there are patients and parents who educate the schools about children with disabilities. Anyhow, he asked if I would like to get involved with something like that in my local area, as tehre is virtually nothing which promotes support for skin conditions here. (Though I am the only one in my area with ichthyosis. Many have excema and dermatitis though.)

So I will let you know what develops [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Posted by: Laura Phillips

Re: A proposal to my doctor - 12/05/00 06:36 PM

Hey Carly, you go girl! I think that's great.

Also, just FYI, the same way we upgraded the bulletin board a while ago we really want to upgrade the chatroom soon. So, look for a better chatroom here in the next few weeks (we're serious this too! we're really going to make this happen soon).