Strategy for Epilepsy Care in Ontario
Epilepsy Ontario December, 2005
Prevalence of epilepsy: 1/100 people. Prevalence of drug-resistant epilepsy: 1/200-250 people. Cost of drug-resistant epilepsy: Vast. Many people with drug-resistant epilepsy are unemployed or under-employed. Many are on welfare. Advantages of the present health care system: The present system in Ontario has access to the most effective epilepsy treatments, including a wide range of standard and new anticonvulsant drugs, non-invasive imaging, surgical techniques, the ketogenic diet, etc. Drawbacks of the present system: Despite these advantages, the present system has a number of drawbacks.
These include:
1) Inequality of care. Care in urban centers is much better than care in non-urban areas, and especially in the North.
2) 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.
3) 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. These are called the "co-morbidities of epilepsy". These are seldom diagnosed or treated.
4) 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.
5) Problems with transition between pediatric and adult programs.
6) Lack of communication between epilepsy centers and community neurologists.
7) 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.
Proposed System
1) Three regional epilepsy centers will be established. They will be located in London (west), Toronto (central), and Ottawa (east). A center for the North would be desirable, but is not, at present, practical. Outreach to the North will have to be done by the three southern centers.
2) Comprehensive Programs will be established at each regional centers. Comprehensive teams will involve neurologists, neurosurgeons, psychologists, psychiatrists, etc. Each program will be run by a senior epileptologist plus a nurse practitioner.
London and Toronto – where resources are already available – will establish Level 4 Programs, as defined by the NAEC. These will include an EMU and specialized epilepsy surgery. Ottawa – with more modest resources at present – will establish a Level 3 program.
Therapy and support will be available for the families as well as the patients.
3) Transportation will be available to and from the regional centers. This will include transportation for people from the north of Ontario.
4) Regional centers will have training programs for new epileptologists, including doctors, nurse practitioners, technologists, etc.
5) There will be a research program associated with each regional centers - with support for tech transfer.
6) Lay organizations - with support groups - will be integrated into the regional centers, and will follow the patients after their return to their homes. Funds will be provided for the lay organizations to assure that they can fulfill this function.
7) There will be outreach from the regional centers, so that workers from the centers (in conjunction with lay organizations) can provide support and advocacy for patients after their return home.
8) The North will be divided into three regions, and each center will take responsibility for servicing one of the regions. This might be done by holding regular clinics in the North, as well as by consultation and telemedicine.
9) Regional centers will meet regularly with community neurologists in their region.
10) A public awareness campaign will be launched to educate people about epilepsy, and about the new opportunities for epilepsy care.
