Tuesday, November 3, 2009

This is part of my on-going series about Family Centered Patient Advocacy

I enjoy health fairs. It is a place to network, see what’s available to others and share our own information. NY State Senator Kemp Hannon holds a senior health fair each year and we are invited from PULSE to set up a booth and distribute literature. At Hofstra University each year, it is comfortable and busy.

There are many people who come to our table and say things like “have I got a story for you” or “this is exactly where I need to be”. No matter what your ailment is, there is a story that goes with quality health care or lack of it……

Patient stories are not just about wrong surgery, infection or misdiagnosis. There are stories about the complications of just navigating the needs of the patient. Each time we tell a patient to make a list of questions, medications or doctors names and phone numbers, we are giving them more “work” to do while emotionally and physically drained due to illness or injury. As a friend or family member there are things very specifically you can offer to do and ask them the following questions:

  • Do you need help making calls about insurance?

  • Can I help you make a calendar for your appointments and list all your doctor’s names and phone numbers?

  • Can I help you choose a doctor?

  • Do you need equipment ordered, returned or fixed?

All these things take time and by offering your time to help with a small piece of their chores, you are can help, where you can.

A young woman at the fair was with her mother in a wheelchair. The young woman was upset because she was delivered the wrong piece of equipment for her mother. Taking care of an elderly parent is hard enough but when things go wrong, it would be nice to have someone to just ask “can you find out about returning this piece of equipment for me”. This chore can be emotionally draining for the young woman, and impossible for the disabled mother but may mean only 30 minutes of your time to help.

Being an advocate for a family can be just as rewarding as being an advocate for the patient. As an objective partner you can listen and help in decision making and during stressful times and take some of the difficult and time consuming tasks away to help.

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