The Ministry of Health recognises the challenges that people living with epilepsy face and is working to understand the condition better.
To help raise awareness of epilepsy and mark Epilepsy New Zealand’s ‘Purple Day’ campaign, the Ministry of Health is releasing the findings of its first Epilepsy Consumer Experience Survey.
The Ministry surveyed 276 people living with epilepsy, to understand more about their experiences with health services, support services, and in their community, school and employment situations.
“Understanding the challenges, needs and priorities of people with epilepsy, what services are working well and where we can improve, is critical to helping improve the services we provide,” says Ministry of Health group manager District Health Board (DHB) performance and support Sam Kunowski.
Epilepsy is a condition defined by recurring epileptic seizures 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. 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.
“In New Zealand, approximately 40 to 50 thousand people are affected by epilepsy, with approximately 2,000 new diagnoses each year,” says Mr Kunowski. “People with epilepsy are high users of health and social services. Yet there is limited understanding of how the condition affects those living with it, or their families and whanau.”
"Some common experiences and issues highlighted by the survey included social challenges, anxiety or depression, physical injury, social isolation and being unable to drive for periods of time."
“We want to use the survey information to guide aspects of our epilepsy service model and improvement action plan. We want all people with epilepsy to live well and have access to high quality, people-centred care that is integrated across hospital and community settings,” says Mr Kunowski.
The next Epilepsy Consumer Experience survey will be conducted in three years time.