On November 9, 2015, the Edmonton Journal published an opinion piece called Heed the locals on land issues. The piece prompted Shirley Witholt, a life-long Wainwright resident who has recently moved to Edmonton, to reflect on her journey with community level advocacy and leadership in continuing care.
Yes, ask the locals! Since we formed our advocacy group (Advocates for Designated Supportive Living Residents – Wainwright) in January 2013, we have spoken with many who have or who had loved ones in continuing care. They share their stories and experiences and insights. Patients and families know the issues, see the problems, but they think they have no way to bring their voice to the table of the decision makers. And really they don’t. We, the citizens, have not been included.
When we realized this, we came up with an idea for how we could be included. First and foremost, we knew we had to become informed. We began by asking questions and soon realized we were not the only ones who didn’t know the answers. No one seemed to know the answers. Questions such as, what are the standards of care, who sets the standards, who is responsible and accountable for ensuring these standards are met, and how do they ensure these standards are met. Three years later, we are getting a manual with answers to these questions and many others.
We have to be informed! We cannot be effective advocates for improved health care (we cannot even be effective citizens) until we become informed. Knowledge is power. We need to ask the questions, and ultimately it begins with these four: Who is responsible? W/ho is accountable? Who should be consulted? Who should be informed?
We also envisioned, and saw as necessary, the creation of a local, representative, community body that would work in collaborative partnership with Alberta Health Services (AHS) and Points West Living (our privately owned and operated, but publicly funded, supportive living service provider). This body would provide support for the facility and a voice for the residents. AHS agreed and we are in the final stages of defining the status, purpose, and role of this body. Though this body will have no formal power, it will have influence, and that is power, too. Ultimately, the locals have the real power. We just don’t always know it.
We have to demand our right to be informed and to be consulted, because, at the end of the day, we (the citizens of this province) are the ones ultimately responsible and accountable for the care provided our sick, our frail, and our vulnerable. We can no longer wait to be asked.