Epilepsy is a condition defined by the occurrence of epileptic seizures. Epileptic seizures are events that arise due to abnormal electrical activity in the brain. There are many causes of epilepsy and many types of seizures that can be experienced.
There is no data on the number of people affected by epilepsy in New Zealand but it is thought to be from 45 to 50 thousand, with approximately 2,000 people newly diagnosed each year. About one third of the people with epilepsy have a type that is resistant to anti-epilepsy drugs (AEDs). Children and the elderly are more likely to be diagnosed with epilepsy than other age groups. Approximately 60 people die from an epilepsy related cause each year.
People with epilepsy are high users of health and social services. Health and social costs for people with drug-resistant epilepsy will be even higher than others, because of the frequency of seizures, greater care and supervision requirements, and complex medical needs.
Epilepsy is considered a ‘hidden burden’ with a low profile in the health system, and limited understanding of how it affects those living with the condition and their families and whānau.
In 2015 the World Health Organization (WHO) passed a resolution that was endorsed by all 194 Member States including New Zealand. The resolution aims to ensure that people with epilepsy can receive timely treatment and also benefit from educational and occupational opportunities free from stigma and discrimination. Countries were encouraged to undertake public awareness activities to reduce misconceptions about epilepsy and encourage more people to seek treatment.
The Ministry of Health is working with an advisory group to improve services to people living with epilepsy in New Zealand. To do this we developed a consumer survey to help understand what is important to people with epilepsy, and particularly how to ensure community and health services meet their needs. We wanted to understand what services worked well for people with epilepsy and those that they thought needed improvement.
The survey was available online for three months, from February to May 2018, and could also be completed in hard copy.