This month's blog comes from Katherine Fleming of HSA Canada.........

"I don't know what I would do if I was given more time to live. I don't think I would be able to handle it. I don't know what I would do". I think of these words often, words spoken by my sister in law, Virginia, at our usual Sunday suppertime gathering of the family. We had just been reflecting on impossible to imagine decisions people need to make in their lives. This was in the fall of 2009, in April 2010 Ginnie was diagnosed with colon cancer and died January 31, 2011, one day before her 54^th birthday. She never wanted to know how much time she had. She was going to live each day like there was going to be another and no one was going to tell her when she was going to "expire". The doctors never expected her to live past November. She lived 2-3 months longer than she was supposed to.

Virginia believed in the power of person centered thinking and remaining in control as much as possible even when faced with something over which you have no control. She loved the idea of the one page profiles and gave permission to share her profile that we posted outside the door of her palliative care hospital room (Please click the pictures for the full profile). She was very interested in helping to make change so she and her family contributed towards a working, not working review to be shared with her medical professionals.  It was very therapeutic for both Gin and her family to work through this exercise. It created a vehicle which shared positive and productive perspectives towards change.

Soon after Virginia's death, I joined our local hospice palliative care society. They were planning around creating ten new hospice rooms in a local facility. Part of their mission reads "to be a voice for the community, an ear to public need". I asked them when was the last time they asked the community what they needed and it had been almost 8 years. Offering to set up a survey of the community, I showed them Virginia's profile, a sample of what family felt was working and not working and the process of Working Together towards Change to use as the survey format. They were intrigued both with the process and Virginia's information. There were some fears that if we ask people what they would suggest as recommendations for change that they will ask for extravagant unrealistic things when in fact simple things are what people are asking for... having an A & W chocolate milkshake, internet to connect with their children, a window that was low enough to see out. We launched our online survey and are just now tallying the results. At first glance the recommendations we are seeing is very similar to that of Virginia's. I will be posting a link to the final report of our survey for a reference for others. The Working Together Towards Change process is an excellent, simple way to gather information  from individuals using supports and can be used to help services maintain the integrity behind statements that they are truly consumer driven.