Provincial Lived Experience Advisory
The Lived Experience Café is inviting voices of the lived experience from across the province of Ontario to share their input and suggestions for change.
The Lived Experience Café is hosted by Dementia Crossroads, the website of Behavioural Support Services, Providence Care Seniors Mental Health (Kingston, Ontario). It is a place for the public, persons with dementia, mental health, substance use and/or neurological disorders, their family, friends and care partners to share information and ideas for change.
Sharon Osvald is the BSO Provincial Lived Experience Faciltator in partnership with the Behavioural Supports Ontario Provincial Coordinating Office and brainXchange.
Who is this for?
Definition of Lived Experience: Lived Experience refers to the experience of living with dementia, mental health, substance use and/or neurological disorders or the experience of being a care partner of an individual with these conditions. Examples of care partners may include family members, friends, etc., who play or played an active role in supporting an individual living with the above conditions emotionally and/or physically.
BSO Provincial Lived Experience Advisory: View PDF
When Do We Meet and Where?
Our goal as a Provincial Lived Experience Advisory is to meet monthly. One month we will meet via teleconference/videoconference and the next month through online (typed) live chat events here on http://dementiacrossroads.ca/chat.php
1. Provincial Lived Experience Advisory Teleconference/Videoconference Conversations:
Provincial Lived Experience Advisory Teleconference/Video Conference Conversations will take place the third Tuesday of every other month from 12:30-2PM (July, September, November, January, March and May).
The next Meeting will take place on Tuesday, July 24, 2018. (Please note our dates for July, September and November dates are outside the usual rotation date. Please see this page and email reminders for the correct dates.)
September we will meet on Tuesday, September 11th (instead of the 18th) and in November we will meet Tuesday, November 27th (instead of the 20th).
To participate online, just prior to the meeting, join the "Zoom Meeting Space" by clicking this link: https://zoom.us/j/3321640663 . You will be asked to download Zoom on your computer. For those of you without a microphone or camera/webcam on your computer, or without stable internet connection, please join us by telephone by calling: 1 877 369 0926 and entering the following Meeting ID: 332 164 0663. If you have any issues or questions, please email Sharon Osvald at email@example.com.
2. Provincial Lived Experience Cafe - Live (typed) Chat Conversations:
The Lived Experience Café will now be hosting a bi-monthly province-wide live chat event and the discussion forums will include those with lived experiences from all over Ontario.The Provincial Live Chat events will take place the third Wednesday of every other month. (August, October, December, February, April and June) from 7:00pm - 8:30pm.
Our next live chat will take place Wednesday, October 17, 2018 from 7:00-8:30PM.
To join a chat for the first time, go to the CHAT page http://dementiacrossroads.ca/chat.php and click the below SIGNUP TODAY link to join this community. When you sign up you may choose your real name or a nick name as your user name if you wish to keep your privacy.
Once you have joined, just before the date and time of the assigned chat, go to the CHAT page and click the link that says LOGIN HERE at the time of the session. You will be asked your username and password again (So be sure to write it down). This will take you directly into our chat conversation.
Topic: To Be Announced.
Discussion Forum: Your comments can be left on the discussion forum at any time. Visit the forum page to create a new discussion thread or comment to an existing conversation.
Purpose and Policy:
Purpose of the Provincial Lived Experience Advisory Live Chats and Discussion Forums: To establish a provincial network of individuals with lived experience to advise and guide Provincial BSO projects and to provide and accessible virtual platform for people to connect with people – through shared experiences.
Discussion Forum/ Live Chat Policy (please read before you join):
Although, some of our stories are not positive/happy stories, this site is not simply a place to voice our complaints. Rather, it is a community to share our stories through the lens of hope with the aim of sharing our lived experiences and making things better for others.
1. Please do not use full names of the people you are caring for. Do not use real names of medical staff, volunteers or the names of hospitals or facilities in your posts.
2. Swearing, name calling or comments that are aggressive and "bashing" towards others are not welcome and will be deleted.
3. We invite you to take advantage of this online space for the amazing purpose of sharing your insights, stories and suggestions for change, as well as your observations of where you saw good things happening in your health care experience. We hope you will felt supported, heard and learn something from each other.
For a detailed list of online and in-person educational opportunities, visit brainxchange.ca and our calendar of events.
What is Behavioural Supports Ontario?: Behavioural Supports Ontario (BSO) enhances the health care services of seniors across Ontario, their families and caregivers, who live and cope with responsive behaviours associated with dementia, mental illness, addictions and other neurological conditions, when they require it and wherever they live, at home, in long-term care or elsewhere.
The Behavioural Supports Ontario (BSO) initiative was created to enhance health care services for older adults in Ontario with complex and responsive behaviours associated with dementia, mental health, substance use and/or other neurological conditions. The initiative also provides enhanced family caregiver support in the community, in long-term care or wherever the patient and/or caregiver(s) reside. For a more detailed explanation of what BSO does visit: http://www.behaviouralsupportsontario.ca/
Who is The brainXchange?: The brainXchange is a network of people dedicated to improving quality of life and supports for persons with or at risk of having brain-health needs related to dementia, mental health and neurological conditions related to aging or have experienced brain health changes earlier in life that are now more complex with aging.
The brainXchange focuses on the national and provincial sharing of resources and knowledge through in-person and virtual exchange to support relationships among industry, researchers, clinicians, policy makers, people with lived experience and care partners. For a more detailed description of what brainXchange is or to browse topics and resources visit: www.brainXchange.ca
Who are our findings supporting?
Ontario Best Practice Exchange Collaboratives:
The goal of these collaboratives is to develop person-centered best practices for supporting both older adults living with dementia, mental health, substance use and/or neurological conditions and their families and care partners. To achieve this goal, we need to understand and hear the experiences of people who are living with or caring for people with these conditions – those with lived experience.
We hope that you will join us to share your experiences and ideas for how the best practices that are being developed can best support your needs or needs of the person you are caring for by becoming part of one or more of the collaboratives listed below. Please contact the Knowledge Broker associated with each collaborative if you are interested or have further questions:
Those currently underway:
- Behavioural Support Transition Units
- Learn about existing successes, challenges and person-centred approaches.
- Gather input on significance of these practices (what themes emerge, what do they tell us about what matters?).
- Develop critical elements for Behavioural Support and Transition Units (BTSU).
- Share critical elements.
- Behavioural Supports Integrated teams (formally Mobile & Inter-Agency Teams)
- Explain the critical framework that has been developed and why some Behavioural Supports Ontario teams are evolving towards an amalgamated team model (internal and outreach teams) to support individuals and teams that work specifically with those presenting with responsive behaviours so that people can be supported wherever they are, receive access to organizations/services throughout the community and facilitate transitions when required.
- Identify the critical elements for experiencing successful transitions using the combined team approach across sectors and across providers; from the perspective of persons with lived experience and from the perspective of providers within the health care team.
- Substance Use / Geriatric Addictions
- Build on the work of the existing community of practice for Geriatric Addictions to province-wide capacity.
- Increase the understanding of Geriatric Addictions/Substance Use among health care professionals (including front-line) and community care partners.
- Identify best practice treatment and supports for older adults living with substance use disorders.
- Build on successful regional strategies, models and products (e.g. pocket guides) for older adults living with a substance use disorders and their families using the framework pillars of Behavioural Supports Ontario.
- Discuss how we can build on and strengthen these ideas through the Community of Practice on Geriatric Addictions to ensure a person and family-centred approach.
Will be underway shortly:
- Antipsychotic Collaborative
- Surface the current landscape and activities in the area of antipsychotic prescribing practices in British Columbia and Alberta in order to shift Ontario’s practices to focus more on person and family-centred best practices with the help of recent documents and established guidelines about antipsychotic use (e.g. Health Quality Ontario's Looking for Balance Report).
- With the primary focus being the use of antipsychotics in long-term care, we want to learn how to support persons diagnosed and their families in their understanding of what are appropriate uses for these medications and what would be the best way to begin discussions regarding their use.
- Health Links & Primary Care
- Move toward a shared understanding of what Coordinated Care is and why it is a beneficial person-centred practice.
- Develop strategies surrounding the coordination of care for individuals who are seeing multiple providers and how to simplify a person’s experience with the overall goal of better care.
- Identify best practices in coordinated care planning that are person and family-centred.
- Explore ways to begin to use/enhance use of Coordinated Care Plans in Primary Care and Health Links for older adults with complex care needs due to mental health, substance use, dementia or other neurological conditions.
- Surface other processes and tools for Coordinated Care Planning, while emphasizing that the intention of the work done at the in-person event will be exploratory – sharing and scanning for existing practices and resources with the goal being to move toward identifying critical elements over time.
- Tertiary Care / In-Patient Speciality Services
- Continuing the work that has been initiated by this established (2014) tri-organization Collaborative and its 3 associated universities
- We are looking to move this work forward reinforcing patient and family first, with a focus on high needs groups with complex behavioural health issues who need the services and supports offered by specialized geriatric mental health care.
- An overview of previous work including survey responses of individuals/families who have had experience in a tertiary geriatric psychiatry behavioural unit will be provided.
- We will discuss point of care (the care that is delivered at the bedside) with an emphasis on patient safety as it pertains to a person and family-centred approach.
- We will share perspectives and gather input related to describing and measuring the unique needs, experiences and resources associated with this complex population and its carers.
BSO Provincial Lived Experience Facilitator
Behavioural Supports Ontario
Provincial Coordinating Office Team
Monica Bretzlaff, Manager:
North East BSO,Provincial BSO
Katelynn Viau, Project Coordinator:
Provincial Coordinating Office,
Behavioural Supports Ontario
Lisa Salapatek Chief Program and Public Policy Officer
Alzheimer Society of Ontario
How to Reach Sharon Osvald:
Phone: 613- 475-9943
P.0. Box 73, Brighton, ON.
Facebook: Lived Experience