Hello Members of the Virtual Lived Experience Café,
I just wanted to give you all an update as to where I am "at” with the Lived Experience Network.I must confess, I am further behind in my time line than I had hoped to be – particularly in the completion of the Lived Experience Report. I have now met with groups from all regions in the South East and feel confident that everyone will be represented fairly.
Some good things have kept me behind on my schedule. One on Mother’s Day, my daughter brought our first grandchild into the world: Grace Ellie. Secondly, I have had some really good opportunities to present the collective findings of our population at Provincial, Regional and National Levels having travelled to several talks/workshops with Dr. Ken LeClair in Toronto as well as assisting with our local In My Shoes Event.
Looking ahead, I have been asked to share the collective observations of our population with Behavioural Support Services of Providence Care for some specific projects and services they are developing and assessing. It is my hope that between our future visits and the online discussion boards and live chats, we will be able to provide some specific real lived experience feedback that will help impact the services – new and old.
Thank you so much for your involvement with the Lived Experience Network. Since our launch in March, we’ve had 34 members join the site, sharing observations for change with the medical community and with each other.
I wanted to share a few things with you.
The Discussion Boards: You will see a slight change in our discussion boards. Initially, when we first began the site, a list of generic discussion boards were chosen to get the conversations going – i.e. Long Term Care, Respite etc. However, because the technology on www.dementiacrossroads.ca does not support the ability to answer individual comments, these long broad conversations have been a bit more difficult to follow.
As you will see, I have created more specific discussion threads based on the topics you have shared. Moving forward, I encourage you to begin your owntopics – i.e. Hearing Aid Suggestions, Website Recommendation, Helpful Service, Emergency Room Experience etc. This will make our conversations more specific and easier to participate in. Please be sure to check out some of the interesting conversations that have recently been posted. One in particular of interest is the recent request of "bluebird” who is looking for input for Questions For Candidates before the June 12th election. There are also some great tips for caregiving by "Ryley” and others. Be sure to visit all the boards and add your advice and observations for change.
Live Chat: Each month The Lived Experience Café will be hosting two Live Online (typed) Chats – one during the day and one in the evening. Please note, this month I am busy preparing a report outlining my findings from the face to face interviews, phone calls and online conversations I have been having since this project began last Fall. Therefore, there will not be a Live Chat in May, Our Next Live Chat Event will be Monday, June 23 DAYTIME CHAT from noon to 1PM AND Tuesday, June 24th EVENING CHAT from 6:30 to 8PM. Topic to be announced. I will be sure to pass on my findings to all of you!
I look forward to speaking with you in the coming days. Thank you again for taking part in this important sharing of knowledge. Please keep spreading the word with your friends and family!
Lived Experience Coordinator
Behavioural Support Services of S.E. Ontario
in partnership with the Alzheimer Societies of S.E. Ontario