May 25, 2012 –The Change Foundation, the mandate of which is to promote, support and improve health and the delivery of healthcare in Ontario, released a report called, “Loud and Clear: Seniors and caregivers speak out about navigating Ontario’s Healthcare system.” The report explored and identified major problems experienced by seniors and their informal caregivers as they navigated through the health system.

The report was based on direct consultations with seniors across Ontario who conveyed experiences moving through various parts of the healthcare system. The focus of the consultations and report were on transitions in care, from the hospital to home, or assisted living to the operating relationships between family doctors and referral services such as specialists, labs, clinics and rehabilitation centres..

This study was done because the health and social needs of seniors, particularly with chronic health conditions, are often complex and the healthcare services and practices are not adequately addressing their needs. This report points to evidence of potential ageism in the healthcare system, senior’s lack of access to adequate care, and general lack of support and quality of care for seniors, all of which amounts to difficulties moving smoothly through the province’s complex health system.

Through in-person conversation, webinar dialogue, and online engagement, study collected senior’s stories, experiences, and ideas. Two major questions were asked regarding senior’s experience in navigating of the health care system and the effect of the senior’s relationships with people on their experience:

1.    What was your experience moving from one part of the healthcare system to another?     And, what could have made your experience better?
2.    How were you treated as a person through your health care journey – moving from location to location (or within locations), provider to provider, service to service?

The answers to those questions led to the following major findings:
•    Primary care is the leading factor in hospital to home transition problems but many seniors experienced poor coordination, follow-up, and communication;
•    most seniors report inadequate time to discuss health complaints in single appointments, and when discussions occurred, some were not taken seriously;
•    the majority (55%) of the study’s participants say navigating the systems is difficult, causing confusion or uncertainty about the next step in attaining care;
•    most problems were due to poor and/or lack of communication within and between systems, such as between health workers, care facilities, primary care physicians and other providers, and patients/caregiver and health care provider;
•    many do not feel adequately involved in decision making processes and often don’t understand how decisions were made about their care;
•    caregivers often lacked the resources and experienced burdensome transitions from one type of care or service to another;
•    most vulnerable seniors, such as those with cognitive deficits or mental health problems, face greater barriers, especially those who do not have a caregiver or family/friend support.

Based on these findings and input, the Change Foundation made the following recommendations:

1.    Make primary care accountable for guiding people’s transitions through the health system by increasing coordination and communication between physician an referral services and by allocating enough time in appointments to discuss health issues.
2.    Develop an accessible map or guide for seniors and their caregivers to help them navigate the system.
3.    Communicate to patients a list of their rights, expectations, and processes for moving through various levels of needs.
4.    Include seniors and their caregivers in decision making and access to information. The process should be more transparent.
5.    Promote equity for all by ensuring that people who are facing barriers are not falling behind and encourage patients and caregivers to be proactive and advocate on their own behalf.

The “Loud and Clear” report echoes a number of CARP advocacy points on health system improvement. For one, it restates the crucial role of navigation. Without proper navigation services, the health system can be daunting and alienating. It also affirms CARP’s position on the importance of an integrated continuum of care, from first diagnosis and subsequent treatment to longer-term care, patients should know what to expect when transitioning through the system.

Finally, the report also reiterates CARP’s long-standing advocacy on caregiver training and integration. Informal caregivers provide a valuable service often at great personal expense. A little training and resources from the formal health system can go a long way to helping family caregivers in their daily tasks.

For more information and full report, click here