Epilepsy facts and terminology
Epilepsy is one of the most common neurological conditions in the world. Approximately 1 in 97 people live with epilepsy in Scotland, that’s around 58,000 people.
Epilepsy facts
- Epilepsy is defined as the tendency to have repeated seizures which start in the brain.
- Epilepsy can affect anyone, at any age and from any walk of life.
- No two people experience epilepsy in exactly the same way. For one person, epilepsy can mean complete seizure control on medication. For another, it can mean uncontrolled and frequent seizures despite medication.
- A seizure is a sign of temporary disruption to the brain’s electrical activity. If there is excessive electrical activity in the brain it can cause a seizure.
- There are around 60 different types of seizures and epilepsy syndromes, and a person can experience more than one type. Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others can lose consciousness.
- Seizures are generally divided into two main types, focal seizures and generalised seizures.
- Focal seizures only affect one part of the brain. People can experience focal seizures with full awareness or limited awareness.
- Generalised seizures usually affect the whole of the brain and will cause loss of consciousness, even if for just a fraction of a second.
- Many people recover from a seizure within an hour, but it can take some people several hours, sometimes even days before they feel back to normal again.
Prevalence
- It is estimated that over 58,000 people in Scotland are living with epilepsy (Scottish Government).
- Epilepsy is the 2nd most common neurological condition in Scotland, after migraines.
NHS Scotland Waiting Times for Neurology (2023)
- Average of 15 weeks from referral to diagnosis across the NHS.
- 60 Week wait in NHS Ayrshire & Arran, 46 week wait in NHS Lanarkshire.
Mental Health
- Studies have estimated that up to 50% of patients with epilepsy develop psychiatric disorders, the most common being depression, anxiety, OCD and PTSD.
- People with epilepsy have a 2–5 times increased risk of developing any mental health disorder.
- 1 in 3 patients with epilepsy will have a lifetime mental health diagnosis.
Epilepsy Scotland did a survey in 2023 which informed its report Epilepsy On The Mind. The report found that;
▪ 85% of respondents believed epilepsy impacted their mental health.
▪ 1 in 3 said they had depression,
▪ around half said they had anxiety,
▪ 1 in 4 said they had both and others noted OCD and PTSD as issues.
Isolation
- 72% of people with epilepsy suffer from some level of social isolation
Stigma/judgement
- People with epilepsy often worry about how they will be perceived if they have a seizure when they are out, alone, in the community. This increases stress which is often a trigger for seizure.
- People are routinely thrown off buses and trains for having seizures with people thinking they are intoxicated- often they are kicked off in unfamiliar places, often in a confused post seizure state.
Employment
- Epilepsy can make it more difficult for individuals to find or remain in paid employment. Often this is due to inflexible and ill-informed employers.
- Only 34% of working-age people with epilepsy are in employment (Office for National Statistics, 2022).
- 48% of respondents to an Epilepsy Scotland (2023) survey were not in employment.
- 61% said their epilepsy impacts their employment.
People with epilepsy often have co-morbidities.
- A European study of people with epilepsy found they had higher rates of high cholesterol, Type 1 diabetes, osteoporosis and migraine than control groups.
Cognition and memory
- Some impairment in cognitive function and memory is reported by people with epilepsy.
- Short term memory in particular can be affected by epilepsy.
Sleep
- 1 in 3 people with epilepsy experience sleep disturbance.
- Poor sleep and sleepiness through the day are common among people with epilepsy.
Deprivation/poverty
- People in the most socially deprived areas in the UK are twice as likely to have epilepsy as those in the least socially deprived areas.
Epilepsy can kill
- Over 100 people a year officially die of epilepsy every year from a mixture of SUDEP, accidents, drowning, and other medical factors (Scottish Health Observatory).
- The number is likely much higher as many deaths which have epilepsy as a causal factor do not have epilepsy as cause of death.
- A study into this showed that the figure is probably closer to almost 300 deaths a year in Scotland due to epilepsy.
Suggested terminology
- People do not want to be defined by their condition, like calling someone ‘epileptic’. It is important to see the person and not the medical condition, it is more helpful to say ‘a person with epilepsy’.
- The term ‘seizure’ or ‘epileptic seizure’ is preferred by many people, and episodes should not be referred to as a ‘fit’.
- Epilepsy is a condition. It is not an illness.
- A ‘victim’ or ‘sufferer’ implies someone is helpless and this is not helpful language when describing people with epilepsy. We prefer to say a ‘person affected by or living with epilepsy’.
- Grand mal seizures are now called tonic-clonic seizures.
- Petit mal seizures are now called absence seizures.
