We all need a “Time to Play” but what if your family member; spouse, child or parent is ill, diagnosed with a life changing disease or suddenly injured and struggling to care for themselves?
What role can you play in their recovery to be sure they are getting the best care possible so you can both go back to the lifestyle you are used to?
At PULSE of NY, a grassroots patient safety advocacy organization we encourage the friends, family, colleagues, religious organization and entire community of the patient to take an active role in helping the patient, and evenhelp the closest family members get through this difficult time. Here are some things we suggest.
First, the patient should choose a Care Coordinator. Keeping the patient in control at all times is very important to helping. A patient’s advocate or care coordinator should not be making decisions about the patient without the patient’s participation. As long as the patient can speak, hear and make decisions, they should be encouraged to. The Care Coordinator is the link to the patient’s support system so they are not overwhelmed with directing people to help. If there is no one available to be a Care Coordinator, PULSE will help in that role or, support someone willing to try the role of the Care Coordinator. The Care Coordinator will help coordinate the patient’s needs such as organizing the friends or family to help with medical care, medication coordination, research information and help with what services may be available for the patient. The Care Coordinator can organize rides to medical appointments, train someone in listening, taking notes and other direct support services but may also include finding people who may want to help with cooking, cleaning, picking up children from school or paying bills when the patient is overwhelmed.
All these services are important to a patient’s recovery. Getting to the right doctor or hospital and getting the correct medication or treatment is important to the patient’s safe recovery. Having a Care Coordinator or Patient Advocate who can direct the patients larger, loving community, can help the patient find much more “Time to Play”!
To learn, more about Family Centered Patient Advocacy, visit www.pulseofny.org