Families: Powerful allies, tire-biting advocates!

1. Families: Powerful allies, tire-biting advocates! Sharon Scott Mulder, Manitoba, Canada slsm@mts.net Brenda Wentzell, Alberta, Canada brenda.wentzell@shaw.ca

2. Connecting the Dots Yukon Gander St. John’s Grand falls Corner Brook Edmonton Charlottetown Terrace Fredericton Thompson Sussex Levis Halifax St. Stephen Saskatoon The Pas Quebec City Courtenay Vancouver Calgary Timmins Hudson Montreal Victoria Kelowna Winnipeg Kenora North Bay Thunder Bay Sudbury Ottawa New Westminster Grand Forks Brandon Surrey Kingston Owen Sound Kincardine Toronto Peterborough Grand Bend Hamilton London Windsor

3. Connecting the Dots Edmonton Manitoba Alberta Ontario Gimli Winnipeg London

6. Edmonton Alberta Canada

7. Edmonton in the Winter

9. Family Support Groups • PEPP Parent Support Group - Established June 1998 - 14 families - London, Ontario - Peer driven • Manitoba First-Episode Psychosis Family Support Group - March 2000 - Modelled from the PEPP Parent Support Group - Peer driven - Found families without a service

10. Tire-biting Advocates! • Steps in Successful Advocacy - Define the issue. - Decide what action is needed. - Gather information about successful strategies to bring change. - Choose one and do it. - Evaluate the process and outcome.

11. Advocacy in Action PEPP, London, Ontario • Financial crisis at PEPP • Real threat – potential for staff cuts • PEPP staff turn to families for help • PEPP families MOBILIZE • ACTION PLAN implemented • SUCCESS!

12. Advocacy in Action 2000-2005Winnipeg, Manitoba • Manitoba First-Episode Psychosis Family Support Group Advocacy • March 2000 First meeting of the group in conjunction with the Manitoba Schizophrenia • Society Conference • May 2000 ‘Flowers to the Legislature’ – press release • April 2001 Meeting with a sympathetic MLA • May 2001 ‘Flag Psychosis Early’ Walk at the Legislature • June 2001 NDP Caucus Presentation • Liberal Caucus Presentation • June 2001 Meeting with Manitoba Health, Manitoba Adolescent Treatment Centre, • PsycHealth Centre • July 2001 Meeting with the Liberal (Opposition) Leader, Dr.Jon Gerrard • August 2001 Meeting with Manitoba Health and rural Regional Health Authorities • August 2001 Winnipeg Free Press story ‘Parents Lobby for Early Intervention’ • September 2001 Meeting with the Winnipeg RHA Vice President and senior staff • October 2001 PC Caucus Presentation • October 2001 Meeting with the Minister of Health • November 2001 Liberal Leader, Dr. Jon Gerrard – press release, CBC radio • November 2001 Meeting with the Premier’s Aide • November 2001 Submitted two case studies to the Winnipeg RHA • January 2002 Winnipeg Regional Health Authority meeting • April 2002 Letter to the Minister of Health • May 2002 ‘Flag Psychosis Early’ Walk at the Legislature • June 25, 2002 Meeting with the Minister of Health • July 27, 2002 Winnipeg Free Press announcement of new EPI service! • August 3, 2002 Flowers/letters of thanks to the Minister of Health and Dr. Jon Gerrard • May 2003 ‘Flag Psychosis Early’ walk at the Legislature – Red Carnation to all MLA’s • October 2004 Letter to the Minister of Health • May/June 2005 Advocacy for additional resources when program reached capacity

14. ‘The Big Night’

15. ‘Psychosis Sucks Social’ • Winnipeg, Manitoba • From the British Columbia EPI Program • Dance/food/raffle • Goals - Raise awareness - Raise funds - Have fun! • Funds for the benefit of participants of EPPIS

16. Family Recovery Process * • Shock/denial/disbelief • Recognition/acceptance • Coping • Personal/political advocacy • The Role of the Family in Psychiatric Rehabilitation Boston University

17. Families Can Make a Difference!