In May 2018, Carole Ann Alloway, a family caregiver, and I partnered to develop and present a keynote address at the International Foundation for Integrated Care (IFIC) annual conference in Utrecht, The Netherlands. A few months after our presentation I asked Carole Ann to reflect on her experience.
On the precipice of change, we stand to take the growing provincial interest in young carers and turn that into a national framework.
Just as there are many ways to roast a chicken, whip together a savory pesto, or bake a chocolate cake, there are many ways to go about creating meaningful change at a system, organizational, provider, patient and family caregiver level.
People often ask us how to truly co-design and engage with caregivers and healthcare providers. In Lessons from Changing CARE: The Discovery Phase of Experience-Based Co-Design, we do our best to answer that question.
I knew we had something special, and I knew it lended itself to an engaging multi-media approach. So we set out together to create the Caregiver Wishlist.
We first took on the issue of Ontario’s privacy and consent rules for caregivers in our 2017 report–Making Privacy and Consent Rules Work For Family Caregivers–after hearing repeatedly that privacy and consent is a barrier faced by many of Ontario’s family caregivers, and is too often used as a crutch for the lack of engagement with family caregivers.
It’s hard to believe that it’s been a year since the four Changing CARE teams launched their innovative, caregiver-focused projects.
One year, 15 cross-cutting working group sessions, 17 bi-weekly project managers meetings, and numerous steering committee meetings, to be more precise. Most impressively, across the four teams, more than 650 caregivers have participated, informed and partnered on the change they’d like to see.
Today – on Family Caregiver Day – Premier Kathleen Wynne announced the Ontario Ministry of Health and Long-Term Care’s intention to provide $6.5 million in funding for the creation of a caregiver organization in our province.
The way to get stronger is to let go of power, according to what Helen Bevan of England’s National Health System told a group of leaders in Ontario health care at The Change Foundation recently. That seemingly paradoxical notion made sense to those of us gathered there once we grasped Bevan’s argument that only by shifting to different kinds of power, finding it in the hands of different people and using it in different ways will health systems be sustainable and provide the care patients deserve.
When I talk about the impacts of being a young carer, my lived experience sheds light on how complex it is.