Delays in Getting Proper Epilepsy Treatment
Last updated: August 2022
When someone has epilepsy, they may experience a delay in receiving treatment. The delays happen for a variety of reasons.
Doctors may not be able to diagnose epilepsy quickly. Some symptoms of epilepsy are common signs of other conditions, like fainting, migraines, and panic attacks.1
What causes diagnosis delays?
When someone has a seizure, it could be a sign of epilepsy or could be a sign of something else. Signs and symptoms of epilepsy are different for everyone. Doctors who are not neurology specialists may not know what to look for when someone has had a seizure.2
Plus, if someone has what is called an absence seizure, routine tests used to diagnose epilepsy are not always helpful. Also, absence seizures do not cause jerking or stiffening movements, but what often looks like daydreaming. Someone with absence seizures may not realize they are having a seizure and those around them may not think anything is amiss.2
Sometimes, doctors cannot diagnose epilepsy based on only 1 seizure. Doctors often need to look for a detailed history of seizures to find a pattern.2
Once someone is diagnosed with epilepsy, there may still be a delay in treatment. The person may need to wait on a referral from their primary doctor to see a specialist. Even after being referred to see a specialist, they still may need to wait to get an appointment.1
A gap in epilepsy treatment
The difference between people who have started treatment and those who have not is something doctors call the "treatment gap." It exists for all conditions, not just epilepsy.2
Medical, social, political, and cultural reasons can lead to this gap. For example, someone may hold certain beliefs that cause them not to seek treatment. In many countries, there are not enough neurologists to properly diagnose everyone who has seizures.3
A lack of access to healthcare resources and overall awareness of epilepsy may also cause a gap in treatment.2
What happens when there is a delay?
A delay of treatment for epilepsy may not cause long-term issues for all people. However, someone who has had an increased number of seizures before receiving treatment may face injuries or even death.
Delaying treatment can threaten the safety of someone with epilepsy and the general public, especially if they are driving.1
In a study of 176 people whose epilepsy treatment was delayed for 1 reason or another, 4 out of 10 did not have any seizures for 5 years. Another 4 out of 10 had no seizures because their medicine was changed or increased.1
However, the remaining people continued to have seizures even though they were on medication. The group of people who had large numbers of seizures did not respond well to treatment.1
Studies show that having increasing numbers of seizures before being diagnosed leads to poorer long-term outcomes.4
Starting epilepsy treatment
Doctors recommend regular follow-up appointments after someone receives an epilepsy diagnosis and begins treatment. Caregivers may want to have frequent conversations with their person with epilepsy on how to help them manage their condition correctly.
Would you like to talk to others in the epilepsy community about delays in receiving the proper care? Reach out in 1 of our forums.
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