Strategy - Progress Report – December, 2005
By Dr. Mac Burnham, Past President and Chair of the Strategy Committee
Epilepsy Ontario has been working on a Strategy for Epilepsy Care in Ontario for over two years. The present article is a report on our progress. The Strategy started at a Canadian Epilepsy Research (CERI) meeting. (CERI is the research arm of the Canadian League Against Epilepsy). Dr. Rick Riopelle described how the Heart and Stroke Foundation of Ontario managed to get their Stroke Strategy adopted by the Ontario Ministry of Health. Epilepsy Ontario, in conjunction with Epilepsy Canada and the Canadian Epilepsy Alliance (CEA), undertook the development of an Epilepsy Strategy for Ontario.
I prepared a first draft of the Strategy, based on the Heart and Stroke document. This was circulated widely to Epilepsy Ontario members, CEA members, and also to Epilepsy Canada. This draft was discussed at the Epilepsy Ontario AGM last year, and also with a subcommittee of Epilepsy Ontario's Executive Committee (Drs Hwang, Graveline and Burnham.) The first draft was modified based on these discussions.
Based on a focus group in Oakville, we then devised a questionnaire about our clients' needs. This was posted on the Epilepsy Ontario website. We have received hundreds of responses to date. These have been tabulated, and have contributed to the Strategy. The Strategy was also discussed at the University of Toronto Epilepsy Research Program's Annual General Meeting, and a third draft was prepared. Finally, a fourth draft has been evolved based on discussions with hospitals (below). The fourth draft follows this article. We would like your input on the fourth draft.
This summer, I began to talk to clinicians and administrators. Starting in the Toronto area, I have received approval in principle from Dr. Carter Snead (Head of the Pediatric Program at the Hospital for Sick Children) and from Dr. Peter Carlen (Head of the Adult Program and the Toronto Western Hospital). Dr. Carlen arranged for me to meet with his administrator, Ms. Mary Ann Neary. Later I met with Dr. Snead, his nurse-specialist, Ms. Irene Elliott, and administrator, Marilyn Booth. I have discussed the strategy with Epilepsy Toronto, Epilepsy support centre (London), and Epilepsy Ottawa-Carleton as they will be an integral part of the Comprehensive Program. Other community epilepsy associations will be contacted in the near future.
I have also been in communication with Dr. Warren Blume in London Ontario and with Dr. Alan Guberman in Ottawa, and both have agreed in principle. In July, I met with Dr. Blume and a group of doctors from the Toronto Western Hospital, including Drs. Carlen, Wennberg, del Campo and Valiente. Once again, there was agreement in principle. Dr. Valiente began work on a "nuts and bolts" document suitable for the Ministry of Health. A further Strategy meeting took place on September 23rd,,just before the CERI Retreat in Ottawa. Among the attendees were Warren Blume, Peter Carlen, and Sam Wiebe (president of the CLAE).
In short, there's been a lot of talk, and a lot of agreement in principle. After Christmas, Dr. Valiente and I will try to hammer out a final version of the Strategy. If you lived in the ststes, you would have access to any of a number of large, comprehensive programs. Since you live in Ontario, you do not. I do not think that is fair. I'd really like your input at this point. The present Strategy follows this article. Does it meet your needs? My email address is: mac.burnham@utoronto.ca.
