Where Was That Pamphlet Five Years Ago?
I recently came across a pamphlet on advocating for yourself and involving patient and family advisers in your decision making and care. I could have seriously have used that pamphlet five years ago when I was floundering around the medical system, unsure that the care I was receiving was the best I could be receiving and unsure of where to go next.
I came across this pamphlet when looking for a phone number for the Spiritual care office at the hospital. My severeasthma clinic is located in a Catholic hospital, they often have real live nuns that answer the phone. Legend has it, the nuns live or used to live upstairs. I can attest that they have been some of the sweetest and most caring people that I have run into at the hospital.
The spiritual care office has a connection to a bunch of patient services that you can be connected to. They will connect you to the patient and family advisor program. Essentially, the patient and family advisor program follows this definition Patient Family Centered Care is “bringing the perspectives of patients and families directly into the planning, delivery, and evaluation of healthcare to improving its quality and safety ".1 The programs essentially helps families and patients navigate the healthcare system by sharing their stories and providing feedback on website, forms, health information handouts and discharge instructions. This is such a cool program, what a great way to translate all our lessons learned as patients into such a positive resource. Honestly, some of the instructions we are given totally blow. They are often unclear or outdated. I love that they are using patient and family experiences to design things that work for our needs. I definitely want to look into this opportunity further.
This center also has connections to making your experience navigating hospital life easier. I was looking for the information on hospital affiliated hotel rates of all things. My specialty center is over an hour of urban sprawl driving, which is almost 2 hours of driving in traffic away from the city I live in. This is generally an easy commute, however, I have to be in the same city the day before my appointment for an event that ends late the evening before and with the threat of snow. I am thinking about staying overnight. I think as patients we sometimes forget that we can make things easier for ourselves. We just need to take a bit of a pause and tap into the available resources. I don't endorse hospital rates if you are just taking a vacation in a city, plus I think they have fairly tight controls on who gets the rate codes, etc. However, if you are a patient with several trips to the clinic, hospital, etc or the need to be under observation post exacerbation, bronchoscopy, etc it can be a simple thing that makes the world of difference. I have had to stay over a couple of times because I live to far (or far according to medical officials, "in case" there was a complication etc. It is definitely worth checking out the services of your local clinic or hospital, to see if you can get access to case workers, support solutions like staying nearby by instead of constant driving adventures or in some cases telemedicine. Since I technically live too close for telemedicine, I am not a candidate but I have walked by a session and it was incredibly cool. On a subsequent trip, I actually got to meet the patient. It was really interesting hearing how that kind of access to care made such a big difference to them.
I would love to hear about your resources or ways you have tapped in to making patient life easier.
How does your asthma change with the seasons?