Epilepsy Action Day - PowerPoint Presentation

Slide1

Epilepsy Action Day at Queen’s Park

October 27, 2015Slide2

15

epilepsy agencies across Ontario represent nearly 90,000 people living with epilepsy.

Epilepsy agencies provide direct support to a sub-set of individuals and families living with epilepsy.Agencies offer the community support necessary to help people to live well with epilepsy, such as:Epilepsy education – individuals with epilepsy and their families, teachers, employers, peer groups, community at largeSelf-management tools and strategiesPeer-to-peer supportSystem navigationAdvocacy – school, workplace, access to supports and servicesPeople living with epilepsy learn how to manage their condition, enabling them to better fulfil the many roles they play in the community through information, education and support.

Who We AreSlide3

Gap Between the Burden of Epilepsy and Resources

Direct per capita health care costs:

1. Alzheimer's Disease and other dementias2

. Epilepsy

3

. Parkinsonism

Indirect economic costs:

1

. Hospitalized Traumatic Brain Injury 

2

. Epilepsy

3

. Multiple

SclerosisSlide4

What is Epilepsy?A common neurological disease that is characterized by recurrent seizures.

Epilepsy has no age, racial, geographic or

socio-economic boundaries.What is a Seizure?A brief disruption in normal brain activity that interferes with brain function.Type of seizure depends on which area of the brain is involved.People may experience an alteration in behaviour, consciousness, movement, perception and/or sensation.Epilepsy 101Epilepsy is an eminently treatable brain disease.Slide5

Ontario does not have a provincial policy or legislation to ensure schools are epilepsy friendly. Students with epilepsy should have the right to go to school,

learn and achieve success in a safe environment.

Parents should have peace of mind knowing that school staff are trained to recognize and respond appropriately to seizures and that rescue medication to prevent life-threatening situations will be administered if required.When Ryan's Law (Ensuring Asthma Friendly Schools) was passed in April 2015, the Ontario government made a commitment to support the well-being of all children and students and establish a comprehensive approach to the management of prevalent medical conditions – including epilepsy. Epilepsy & EducationEpilepsy is one of the most common, serious neurological diseases. In 2010, there were 14,482 children and youth from 0 to 17 years of age living with epilepsy in Ontario.SOURCE: Ng R, Maxwell CJ, Yates EA, Nylen K, Antflick J, Jetté N, Bronskill

SE. Brain Disorders in Ontario: Prevalence, Incidence and Costs from Health Administrative Data. Toronto, ON: Institute for Clinical Evaluative Sciences; 2015Slide6

Seizure control is essential for people with epilepsy.

Ontario

has been a leader in recognizing that epilepsy is a public health problem, but people living with epilepsy need assurance that their care will improve.Without seizure control, people with epilepsy can suffer from severe psychosocial effects including:social stigma associated with seizuresunderachievement in school difficulty finding employmentloss of driving privilegescognitive deficits (e.g. memory impairments)higher mortality rates, including sudden unexpected death (SUDEP)It is estimated to occur in 1 in 1000 people with epilepsy and 1 in 150 for people with uncontrolled seizures.Importance of Seizure Control"A lack of seizure control in both adults and children with epilepsy invariably and severely impacts their independence, productivity, and overall quality of life."

SOURCE: 2012 Ontario Health Technology Advisory Committee – Recommendation: Care for Drug-Refractory Epilepsy in OntarioSlide7

“Given

the sheer number of patients, impact on the health care system, and economic, psychosocial, and medical burden of care,

epilepsy is a major public health issue in Ontario which, to date, has been inadequately addressed. Epilepsy care in Ontario varies from being nonexistent to fragmented, and access to whatever care exists is uneven and unpredictable.”SOURCE: 2012 Ontario Health Technology Advisory Committee – Recommendation: Care for Drug-Refractory Epilepsy in OntarioSlide8

Managing

Epilepsy

Treatment is essential:Ontario must ensure access to all appropriate treatment options to help control seizures and improve quality of life.Provincial Epilepsy Management Guidelines were published by Critical Care Services Ontario (CCSO) in January 2015.

ANTISEIZURE DRUGS

Main treatment for epilepsy

For optimum seizure control, may be prescribed alone or in combination

About 30% of people with epilepsy do not achieve seizure-freedom with medication

OTHER TREATMENTS

Medical Diet Therapies

Dietary treatment programs for children are available in four

centres

.

A

new adult program has recently launched.

SURGERY

Potentially curative resective surgery

Efficacy:

up

to 80%

of appropriately selected

candidates achieve seizure-freedom

Treatment

Gap:

Approximately 20% of people with epilepsy are potential candidates but only 2% undergo resective surgery

.

Palliative surgeries

, such as:

Vagal Nerve Stimulation (VNS)

Deep Brain Stimulation (DBM)

Other surgical treatmentsSlide9

Managing Epilepsy

Individuals and families living with epilepsy require access to co-ordinated care and integrated supports to effectively manage this chronic disease

Community-basedprograms should be an integral component of the model of care for

Ontarians living with epilepsy

"The impact of epilepsy on quality of life is far greater

than that

of most other

chronic

conditions

."

SOURCE: 2012 Ontario Health Technology Advisory

Committee – Recommendation

: Care for Drug-Refractory Epilepsy in Ontario

Social Support Network

Community

Support

Medical

CareSlide10

"Given these grim realities of living with epilepsy, the prevalence and incidence of epilepsy in Ontario and the status of care being provided to those with epilepsy in the province are quite sobering for anyone interested in the health and well-being of the people of Ontario, regardless of socioeconomic or cultural barriers."

SOURCE: 2012 Ontario Health Technology Advisory Committee Recommendation: Care for Drug-Refractory Epilepsy in OntarioSlide11

Provincial Epilepsy Strategy

Ontario

has displayed

international

leadership in recognizing and beginning to address the burden of epilepsy.

The Epilepsy Implementation Task Force, a multi-stakeholder group, was established to maximize value from the system of epilepsy care in Ontario

Primary goals

Improve access along the full continuum of care by coordinating resources and wait lists

Establish standardized diagnostic and surgical protocols across centres

Develop support for primary care providers

Six (6) provincial guideline documents will be produced to establish a standardized approach to epilepsy diagnosis and treatment.

Current status

Two guideline documents have been published, the remainder are in final approval/editing stages and are expected to be released before the end of the year

Once the terms of reference are finalized, the task force will be disbanded

Need

to ensure adequate funding for

strategy roll out.

A great deal of excellent work has been completed, we need to ensure it is acted upon.Slide12

New Publications Released in 2015

Epilepsy Implementation Task Force (EITF) Provincial Management Guidelines

Provides assistance in the medical management of epilepsy to primary care providers, pediatricians, community neurologists and other care providers

Includes recommendations for epilepsy diagnosis, treatment and patient education

Report by Ontario Brain Institute (OBI) and Institute for Clinical and Evaluative Sciences (ICES)

Epidemiology of brain disorders in Ontario based health administrative data

15 year cumulative prevalence of epilepsy reported

Public health care costs for individuals living with epilepsy plus 12 other brain disorders Slide13

What Can You Do?

We commend the Ontario government on your response in creating a provincial epilepsy strategy, but people living with epilepsy still need your continued help and action. Please help us advocate for the following:

Secure equitable

a

ccess to effective

s

eizure

c

ontrol.

30%

of

people with epilepsy still experience uncontrolled

seizures and

t

imely access to all treatment options ensures people with epilepsy have the best opportunity to become seizure-free.

Help to ensure adequate funding for strategy rollout.

While the government is a recognized leader in epilepsy strategy, funding has not been guaranteed for the strategy’s implementation.

Protection for students with epilepsy in Ontario schools.

Epilepsy Ontario would like to continue our work with the Ministry of Education and Health and Long-term Care and our community partners to ensure that students with epilepsy are safe while at school and have the opportunity to be part of Ontario’s education success story.Slide14

Thank you!

For more information, please contact:

Paul RaymondExecutive DirectorEpilepsy Ontario905-474-9696

paul@epilepsyontario.org