As a Patient

If you are entering the healthcare system you should have support. That might be a caregiver to help navigate services, an advocate to go to medical appointments with you, or some other kind of assistance. If you are not sure what you need, we can help you decide the best family member or friend to ask, or help you find a professional patient advocate. If you were recently diagnosed with a condition that confuses or frightens you, we can assist in the search for support, by listening to you.

As a Support Person or Caregiver

As a family member or friend of a person entering the healthcare system, you may feel unprepared to help. You may not know what is expected of you, how much you should be doing, or when you may be “in over your head”. Whether you are a spouse, sibling, friend, parent or child, being too close to the patient may make it difficult to think clearly. That’s why Pulse focuses on Family-Centered Patient Advocacy. Because at Pulse, we advocate for the whole family.

Welcome to the world of caring for others. Patient advocacy is fast-growing profession across America. For many years people have advocated for others. Only in the last few years has it become a recognized profession. Some people want to do this because they have been a caregiver for years and now find, with this expertise, they can make a living out of it. Some healthcare professionals want to leave the bedside and be independent caregivers or advocates. Some people have had so much personal experience as patients that they now feel they can help others.

It’s best not to try to be all things to all people. Whatever your reason, first decide what you want to focus on. Your skills and motivations might be best suited to medical billing, medical records, health insurance, bedside advocacy, navigating the healthcare system, or other specialties. At Pulse we have numerous programs supporting people who use the healthcare system as patients or caregivers (advocates). These programs will help you learn from others about their experiences and what has worked for them. You will find support from likeminded people starting out, as well as experienced professional patient advocates. At Pulse we recommend you get some experience helping family and friends to discover what you can do while being a “helper”. Feel free to call Pulse to get some ideas and feedback after attending some programs

At Pulse, we understand the pain that comes with an untoward event in a person’s medical care and the trust that can be lost. Whether it happened to you or to someone you care about, we encourage survivors of medical injury to share their experiences so others can learn. After the fact, people often wish they had done something differently. If you share that experience in a productive manner, others can learn how to be more prepared as patients, or how to be better advocates for others. Most people will say “I want to be sure that never happens again”. At Pulse we help achieve that by making sure your voice is heard.

Pulse does not currently charge for our programs (There are small fees for processing continuing education credits (CEs) for Board Certified Patient Advocates, and for lessons provided in the Pulse Patient Advocate Academy). We do not charge for our advocacy services and support, primarily because we do not offer long-term advocacy. Our goal is to get patients the support they need from the people already available to help. We guide them through that journey, or support the patients in advocating for themselves. We do not charge for these services.

The founder’s young son died in 1990 from a preventable medical error. She felt that if no one knew what went wrong with her son’s care, it would happen again. In 1996 she started a support group with space at The South Nassau Unitarian Universalist Congregation, Long Island, New York, for people who survived medical injuries or lost loved ones. Here they shared experiences with the intention of helping others prepare to enter the healthcare system. She learned that medical errors are a serious problem in this country, so she started attending medical conferences to learn what is being done to keep patients safe. Using that information, programs for the community were developed. For more than twenty-five years Pulse has developed many different projects and programs to support the people — including vulnerable populations — and to continue learning from the public how medical errors could be avoided with patient and family participation.

First and foremost, by joining Pulse as a member. Also, If you have a few hours a month to help develop programs, share your input on ideas or provide a special skill, we encourage you to join our team (application form on request). If you would like to make a donation, please visit our donation page. You can even help grow this important organization simply by spreading the world about Pulse and its mission to help everyone be better prepared as patients, advocates and caregivers.