Ask an Expert: How the Healthcare Navigator Service at Parkinson Society BC can Connect People Touched by Parkinson's with Healthcare Resources and Social Services
Jennifer Allen is a Registered Social Worker (RSW) with a Master of Social Work (MSW) from the University of British Columbia, and a member of the BC Association of Social Workers. She has been involved in neurological rehabilitation for 25 years and has worked in a variety of healthcare settings. Jennifer has specialized skills and knowledge about the psychosocial aspects of neurological rehabilitation, particularly traumatic brain injury, concussion, stroke, Parkinson’s disease (PD), and dementia. This includes helping people work through anxiety, depression, trauma, grief and loss, stress, adjustment to health changes, management of symptoms, and relationship challenges. In addition, she has expertise in navigating healthcare systems and facilitating community linkages. Jennifer has assisted in developing and implementing the Healthcare Navigator (HCN) service at Parkinson Society BC (PSBC).
Tell us about the new Healthcare Navigator service offered at Parkinson Society BC. How does it connect people touched by Parkinson’s disease with healthcare resources and social services in British Columbia?
Parkinson Society BC’s Healthcare Navigator service was established in April 2022 in response to a service gap identified whereby many people with Parkinson’s disease and their carepartners required additional practical assistance accessing healthcare systems and resources. The Healthcare Navigator role recognizes that the job of accessing, understanding, evaluating, and applying knowledge from health systems is a daunting task, which falls primarily on those affected by PD, many of whom are vulnerable older adults. Carepartners/caregivers also often take on the responsibility of understanding and accessing health services, while also juggling other responsibilities like providing care, managing households, and working.
The HCN aims to help people understand how systems work, recognize key players and points of entry, learn strategies to communicate, document and advocate when maneuvering within systems, and identify solutions to resource limitations. The goal of the Healthcare Navigator service is to reduce the social and economic inequities that result from the inability to adequately access resources. By helping connect people to appropriate services and supports, the HCN hopes to increase understanding, self-management skills, and self-reliance, as well as enhance the quality of life for both the person with PD and their carepartner/caregiver.
What types of services and resources can the Healthcare Navigator help with?
The HCN employs a client-centered approach to assist people living with PD and their carepartners in accessing healthcare and social services systems. The HCN process usually involves several different steps, such as establishing contact, assessment, planning, implementation, follow-up, and wrap-up.
The types of services and resources the HCN can help with include:
- Access to home and community care offices within the Health Authority, including home care, respite care, equipment, occupational therapy, case management, and facility care
- Private home support services, resources, and residential care in their community
- Future care planning resources, such as independent living, Representation Agreements, healthcare directives, facility placement, and hospital systems
- Financial resources, such as the disability tax credit and disability benefits
- Assistance accessing community services and resources, such as meal programs and transportation
What are some of the most common obstacles that people with Parkinson’s face when trying to access resources in their communities?
There are numerous barriers to accessing healthcare resources. It is very difficult to grasp how systems operate, to understand the technologies utilized, and to find the exact entry point and make your way efficiently through multiple complex systems (for example, home/community care and long-term care). One system may be different from another and the learning curve for each can be steep. It can be a challenging, frustrating, time-consuming, and exhausting process for those impacted by PD, especially as they are often managing several chronic health conditions, multiple roles, and additional responsibilities. Additional obstacles may be experienced by those experiencing cognitive difficulties, financial challenges, limited support systems, and geographic isolation.
What advice do you have for individuals navigating the often-complex healthcare system in this province?
First, it is important to think about the big picture. Healthcare systems are large entities and navigating them is a complex undertaking. Most large complex systems have many moving parts and different people working within them, each with their own set of roles and responsibilities. Systems are structures that have a function with rules and processes that usually need to be followed, which may change over time. For example, hospitals are big systems whose function is to treat injured or ill people. They have different departments (such as medical imaging or the emergency room) and many different people, such as nurses, ultrasound technicians, and orderlies, all performing specific tasks using a vast array of equipment and technologies. It’s hard to change entire systems, but you can try to understand how they work, to make them work better for you.
Then, think about the smaller picture. Healthcare Navigation involves a broad set of skills and knowledge, which can be learned and used to access services. It is an essential part of self-advocacy and empowerment. Knowledge is power. Focus on building key skills, like planning, organization, and strong communication to be the most effective service navigator and to get the best care for yourself or your loved one. Don’t do this all on your own. Reach out to friends or family. If you are feeling overwhelmed, ask for help from professionals.
We talk a lot about the importance of self-advocacy in our programs and resources. How can people with Parkinson’s better advocate for themselves when accessing healthcare?
The Healthcare Navigator helps people acquire systems knowledge and teaches them skills and strategies to maneuver within health and social systems, so that they can better advocate for safe and adequate care for themselves and their loved ones. These skills and abilities can be used throughout a lifetime.
A practical thing I recommend is keeping a health notebook (for yourself and your family member) to record information, symptoms, and questions. This assists you in being proactive and informed about your own health and well-being. Also, I advocate the “oxygen mask on yourself first” analogy. To care well for others, we must care for ourselves. It is so hard to do, but so important.
How does accessing resources differ for those living in more rural communities? What advice do you have for them?
For people who live in more rural and remote communities, there may be many added challenges in accessing health services due to geographical isolation, limited availability of resources and access to services, transportation difficulties, and harsh weather conditions (for example, snow and ice). Accessing resources online, finding creative “out of the box” solutions, connecting virtually using social media, and sharing information with others who also live in rural settings can be helpful for those in remote communities.
This content was published in the Summer 2023 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.