Lisa Newman is urging patients and their families to take charge of their own health care.
The co-author of Journeys in Cancerland with John-Peter Bradford, Newman, 67, is a psychiatric social worker who has spent much of her career working in hospitals.
But when her husband, David Greenspan, a Toronto lawyer, became ill – he died in 2005 – Newman, a mother and grandmother, learned about being on the consumer end of the health-care system.
“I knew so much about hospitals, but not what it was like to be on the other side,” she said. “The whole health-care system wanted to make us scream. It is a provider-centred system that is not oriented for patients.”
She said out to write a book, she said, because she wanted to help other families in similar circumstances.
The Patients’ Association of Canada, a patient-led organization that believes the health-care system can be improved through patient participation, came on board. It published the book through its publishing arm, Health and Everything Publications.
Dr. Sholom Glouberman, an associate scientist at Baycrest’s Kunin-Lunenfeld Research Unit and president of the association, says in the forward that both Newman and Bradford, who tells the story of his own illness, are excellent examples of how people have begun to take charge of their own care.
“The [book] is a practical and comprehensive guide that will be indispensible to all caregivers,” Glouberman writes.
Newman said that her introduction to adult caregiving came about before her husband’s illness, when her bedridden, elderly mother had trouble breathing.
Newman had a doctor come to the house, and he recommended taking her mother to the emergency room.
“Everything I knew about hospitals told me that whatever else was going to happen that night, Mom should not go to emergency, [where she could risk] infections, falls and worse.”
She convinced the doctor to prescribe an antibiotic, she said, and her mother recovered.
She stresses in the book that the health-care system is not systematic at all. “It is really a very loose, complex, unco-ordinated array of services, many of them unaware of one another.”
For their loved ones to get the best care, she said, family members need to facilitate health-care professionals working together, especially if they’re in different institutions.
“You are the expert on your loved one. Your information can shape the best decisions for their care.”
An important thing to remember, she said, is that secretaries and clerks can be your best friends.
“They often have the power to influence your journey for better or for worse, including finding you an appointment time where none existed, facilitating your speaking to a doctor, or more. You score a lot of points by being courteous and respectful.”
The health-care system, as it stands, is modeled on the military, with top-down orders, she said.
“We need a wind to blow through the system. People need to be empowered from the bottom up. They need to own their information, and they need to speak up and ask questions. Someone needs to speak from the patient’s point of view.”
Newman said that she and Bradford are similar in that they don’t accept things without question.
“Both of us see better ways of doing things. You have to be alert at all times. Patients can’t do it alone,” she said.
“You can’t count on the system to know your loved one like you do. Your presence is important.”
The book is available online from Amazon and Indigo, as well as from the Patients’ Association of Canada.