As we approach Giving Tuesday, which is December 3, 2019, I am supposed to suggest why Pulse Center for Patient Safety Education & Advocacy is an important place to make what may be your final donation this year. Giving Tuesday is a day of charitable giving at the beginning of the holiday season. It is my job to share information; I hope that when you understand what we do, you will want to be part of this work and support it with a donation of $10 or $100 (or more).
Many people have said that they are not sure how Pulse Center for Patient Safety Education & Advocacy works. They are not sure exactly what we do. There are many things we do for patients and their families but it is always related to the patient receiving safe, quality medical care. Or, if they didn’t, what should they do next?
Here is a simple explanation:
Advocacy: Pulse CPSEA is an organization that focuses on patient advocacy as it relates to patient safety and promoting positive patient outcomes. We support and assist the friends and family who act as advocates, and support patients by helping them with tips on communication; on how errors can happen and how to be part of avoiding them; and on navigating the complex healthcare system at a time when stress and vulnerability may be at their maximum.
Education: At Pulse CPSEA our programs have been developed with input from healthcare professionals as well as from patients and family members’ experiences, to help people from pre-teens to adults learn what it means to be a patient. This knowledge is offered in workshops, community presentations, through our Facebook page and newsletter.
Support: If you are a survivor of a medical injury that affected you or a loved one directly and want to talk it through, we are here to support you. If you need continued medical care, we understand how difficult that may be because many of us have also experienced this. Knowing how complex the healthcare system can be, we will also support friends and family who are caregivers.
Often, the people who best understand this are the people who have already lost a loved one due to their medical care, or who have had a less than positive experience in their care or the care of a loved one.
At Pulse, whether as patient safety advocates or community support workers, we do not offer medical advice. We usually do what can be called “brainstorming” to help you find what you need — what is right for you. We have advisors we can ask for information, which can be helpful in knowing what questions to ask and where the answers to your questions may be found.
Here are just two stories that might help you understand more:
A call comes from a woman who is discharged from the hospital and feels she is in need of more care at home. She is alone, can’t walk well and doesn’t drive. She wants to hire someone to help but has no money. Through a series of phone calls, our volunteer helps her understand some next steps and who to call. A neighbor who brought over some food and checked on her, with the support of our volunteer, is now her helper and advocate. Together, with the volunteer's support and a few repeated phone calls, the woman realizes she was not alone and has support, thanks to Pulse.
A woman reports that her mother in a nursing home just cries and says she wants to die. The daughter explains that she doesn’t know why this change has occurred in her mother. A representative from Pulse meets with the daughter and the nurse manager and together they request a list of the mother’s medications. A review by an independent pharmacist suggests that the daughter asks about a combination of certain medications that can cause this behavior. A change in medication restores the mother to her old self and she returns to live with her daughter.
At Pulse, we do not give medical advice. Instead, we support patients and their families in asking questions and getting the information needed to make informed decisions that may change the outcome of the care.
We hope this helps to explain what we do, and hope you will consider supporting this work so we can be here for those who need us.
Best wishes for a wonderful holiday season. Ilene Corina BCPA, President, Pulse Center for Patient Safety Education & Advocacy.