Chronic Disease and Heroism

I read some of this: A Guide To Transforming Patient Experience. It's more for professionals and managers in health care, but has a lot of good information. Though it is about health care in the UK, I think the patient experience has basic similarities no matter where you are.

This is a quote from Page 1:

"Patients tell us that they care about their experience of care as much as clinical effectiveness and safety. They want to feel informed, supported and listened to so that they can make meaningful decisions and choices about their care. They want to be treated as a person not a number"

                                                                                   Transforming Patient Experience

I'm sure that we all want to hit that spot in the middle where the circles overlap.  Effectiveness, safety and a good experience.  If you can't have all of those aspects then it's a personal choice about what we are going to prioritize.

To me short term clinical effectiveness is not the most important. We're in this for the long haul and we need to be able to trust and work with the doctor who is trying to help us. Certainly if we have a doctor like Dr. Greenbaum portrayed himself in his Kiss My ___ article/rant about patients it will be a harder road. 

And I know that for some of us the road is as hard as the one in the picture.


It comes down to RA Warrior's prison rules - a lot of hard choices. I thought this was a very apt post from Kelly Young.

http://rawarrior.com/rheumatoid-disease-plays-by-prison-rules/

It is a darn good thing that Kelly made her own warrior woman.  When I looked for an image of a warrior on Google images I found that I could not associate the warriors in most of them with Kelly.

It is definitely a fight to get along with RA and we don't have a reasonable chance to ignore it. Sometimes I feel like a poster woman for Big Pharma because in my case most of the treatments I have tried have worked in slowing down the progression of the RA and improving my quality of life. I spent most of my working life with RA: when I started finding out about RA I found a statement that said a large % of patients were not working after 10 years and I managed 30 years.

I'd say we are all heroes, and it makes me feel a little better about myself to say that.  I'll have to work on that hero idea. I hope you can too.