Strategy for Epilepsy Care in Ontario (adapted from Epilepsy Ontario) What are some of the current problems in epilepsy care? Inefficiency of care. Patients with drug-resistant seizures may be in the system for some time before they are seen by a specialist in epilepsy. Some are misdiagnosed or improperly treated. Lack of care for the co-morbidities of epilepsy. People with seizures, and particularly drug-resistant seizures, suffer from a number of other, related disorders (e.g. anxiety, depression, memory problems, sexual dysfunction, etc). These are called the "co-morbidities of epilepsy". These are seldom diagnosed or treated. Lack of community support. Ontario has a number of lay organizations that provide community support. These have no public funding, and their effectiveness varies widely across the province. There is a disconnect between the health care system and the lay organizations. The health care system seldom refers patients to the lay organizations. Lack of public knowledge. Public knowledge about epilepsy is far lower than public knowledge about other disorders such as stroke and heart disease. In particular, there is a lack of knowledge amongst teachers, policemen and women and others who interact with people with seizures. How will a proposed Comprehensive Epilepsy Care Program solve these problems? Comprehensive Programs will be established at three Regional Centers. They will be located in London (West), Toronto (Central), and Ottawa (East). Each regional center will have a comprehensive team made up of neurologists, neurosurgeons, psychologists, psychiatrists, etc., all specialized in epilepsy and epilepsy-related disorders. Each program will be run by a senior epileptologist plus a nurse practitioner. As soon as patients have been newly diagnosed with epilepsy, they will be referred to a regional center and evaluated for proper diagnoses and treatment options. Regional centers will have training programs for new epileptologists, nurse practitioners, technologists, and other health care personnel to be specialized in the medical care of individuals with epilepsy. Lay organizations - with support groups - will be integrated into the regional centers to ensure that newly diagnosed patients are directly referred to these organizations and followed-up once they return to their homes. Funds will be provided to ensure that these organizations can fulfill this function. A public awareness campaign will be launched to educate people about epilepsy, and about the new opportunities for epilepsy care. For further details, please visit Epilepsy Ontarios Website at: http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Strategy+for+Epilepsy+Care+in+Ontario Please check out the following link to see an example of a Comprehensive Epilepsy Care Program currently in operation in the States: http://www.mincep.com/index.htm Integrated Epilepsy Care in Ontario Many changes are happening with respect to the care of those with epilepsy and we wanted to take this opportunity to inform you about them. It is important that you know about these developments so that you can be part of these changes. Firstly there is ongoing expansion of the epilepsy program at the University Health Network (UHN). The hospital will in the very near future undertake renovations to expand the epilepsy monitoring unit (EMU), which is important to making an accurate diagnosis of epilepsy, and as well in determining weather or not somebody is a surgical candidate or not. This means that the waiting time to get into the EMU will be considerably reduced once the new five bed EMU begins to operate. We know that this will improve the medical care of many people with epilepsy. This new EMU is only the beginning however. Individuals living with epilepsy are well aware that the care you receive at the hospital and the community resources that are available are not enough. We realize this too. We are trying to build a new model of care for those with epilepsy based on a model proposed by the World Health Organization (WHO). This model needs the hospitals to link with not only patients but with the community organizations to provide the supports that are required to improve ones life with epilepsy. We also need to link family doctors and community neurologists so that everybody is on the same page. We know that care for those with chronic conditions such as epilepsy benefit from having access to nurses, nurse practitioners, as well as informed physicians who are up to speed with the best practices for those with epilepsy. We also know that a lot of information needs to pass between patients, doctors, and their community organizations. This flow of information is not happening presently. We also realize that for those in rural areas with few doctors let alone nurses that tele-medicine is an excellent alternative, and can provide specialized care to those in under serviced regions of Ontario. We are looking to address many if not all these issues in a proposal we are submitting to the Ministry of Health and Long Term Care. This proposal is a partnership between the UHN and the Hospital for Sick Children (HSC). There are also changes that are happening to the health care system itself. The Ontario government is changing the health care landscape and creating Local Health Integration Networks (LHINs). These LHINs are just another way of saying that the Ontario government is regionalizing health care. What ever they are doing the important thing is there are changes happening, and change represents an opportunity. Your epilepsy chapter will keep you posted as to when your LHIN will be having community meetings. You should go to these meetings. They want to hear from you, and you should tell them how you feel about the present care of people with epilepsy. They need to know because they are starting to figure out how they are going to spend their money, and who are the individuals that are not being serviced. It is important that you are at the meetings. The executive directors of the various chapters will be attending these meetings as well, so you will have support. Things are changing, be part of it. Read about the LHINs and how they will affect you. We will keep you posted regarding the progress of the proposal to the ministry. If there are questions or if you have heard about something and you think we should know about it then please tell us. The more we work together the greater the chances of achieving the best possible state of health for those with epilepsy. Finally, if you think of ways your family doctor, neurologist, community organization, or hospital can better help you, please tell us - we want to know. Please send your comments to epilepsyconference@sacec.info. Please visit http://www.lhins.on.ca/english/main/home.asp for more information on the LHIN in your area and for the upcoming town hall meetings!