Epilepsy

A tendency to recurrent seizures. Around 630,000 people in the UK, and a significant number of deaths that were preventable.

What it is

Epilepsy means a tendency to have seizures, which are bursts of abnormal electrical activity in the brain. Around 1 in 100 people in the UK have it.

The stereotype is a tonic-clonic seizure: collapse, stiffening, jerking. That is one type of many. Focal seizures can look like staring, lip-smacking, plucking at clothes, a strange smell, or a few seconds of absence. Those get missed for years, particularly in people with a learning disability, where they get recorded as behaviour.

Here is the figure that should shape how seriously this is taken: around 1,000 people a year die from epilepsy-related causes in the UK, and reviews consistently judge a large share of those deaths to have been potentially avoidable.

Signs you might notice

Any stereotyped, repeated episode: the same thing, the same way, out of the blue.

Loss of awareness, staring, unresponsive for seconds.

Automatic movements: chewing, fiddling, wandering.

Confusion and exhaustion afterwards. Bitten tongue. Incontinence.

Jerks on waking, particularly in teenagers, which is a specific and treatable syndrome.

How it can affect day-to-day life

SUDEP, sudden unexpected death in epilepsy, is the risk nobody explains. It is more likely with uncontrolled nocturnal tonic-clonic seizures, and with missed medication. People deserve to be told about it, because knowing changes decisions about adherence and about night-time monitoring.

Medication adherence is the single biggest controllable factor, and epilepsy medicines are unusually unforgiving about timing.

Driving, employment and independence are all affected, and the DVLA rules are strict. So is the loss of confidence after a public seizure.

For people with a learning disability, epilepsy is far commoner than in the general population, and it is more often poorly controlled.

Supporting someone well

Get the medication timing right, every time. Set alarms, use a dosette box, and treat a missed dose as an incident worth recording rather than a minor slip.

Keep a proper seizure diary: type, duration, time of day, what preceded it. This is what lets a neurologist adjust treatment rather than guess.

Learn the timings that matter. Call 999 if a convulsive seizure lasts more than five minutes, if one follows another without recovery, if the person is injured, or if it is their first.

Do not restrain, do not put anything in the mouth. Cushion the head, time it, and turn them onto their side afterwards.

Ask about rescue medication and get trained in it properly.

For anyone with a learning disability, insist on an annual epilepsy review, not just the annual health check.

Fiducia Guardian holds the seizure record, the medicines and the emergency plan in one place, so a pattern across weeks is visible and a paramedic gets the answer immediately. In a service, Fiducia Together puts the same record in the clinical system with the medication round beside it.

Where to get help

Epilepsy is managed by a neurologist or an epilepsy specialist nurse. Ask for a named nurse, because they are the most useful contact most families have.

Epilepsy Action run a free helpline on 0808 800 5050. SUDEP Action support families and campaign on preventable deaths.

Ask directly about SUDEP risk and what would reduce it. It is a fair question and it should get a straight answer.