Epilepsy in learning disability services: seizure diaries, rescue medication, status epilepticus and SUDEP

Epilepsy is the health condition most likely to kill someone in your learning disability service, and it is the one most often managed on memory. A seizure chart filled in at the end of a shift, a rescue medication protocol nobody has read since induction, and a neurology appointment where the only answer anyone can give is that seizures seem about the same. This guide covers what a service actually has to do: recognise and describe seizures accurately, keep a diary a neurologist can use, give buccal midazolam correctly, recognise status epilepticus, and talk honestly about SUDEP.

The short answer

Around one in five people with a learning disability has epilepsy, rising to the majority in profound and multiple learning disability, and seizures are drug resistant far more often than in the general population. Every person with epilepsy needs a written individual seizure protocol describing their seizure types, their usual duration, what staff do, when rescue medication is given, the exact drug, dose and route, and when to call 999. Every seizure needs recording in the moment with a time, a duration, a description and what was given. A convulsive seizure lasting five minutes or more is status epilepticus and is a medical emergency. SUDEP is a real risk that should be discussed openly with the person and their family and reviewed annually. And every neurology appointment should be attended with a printed seizure count by type by month, not an impression.

Why epilepsy matters so much in learning disability services

Epilepsy is around twenty times more common in people with a learning disability than in the general population, and the relationship gets stronger as the disability becomes more severe. In PMLD services most people have epilepsy, often with several seizure types and often poorly controlled.

It is also more dangerous here. Deaths from epilepsy appear consistently in learning disability mortality reviews, frequently with the same findings: seizures poorly described, diaries incomplete, rescue medication given late or not at all, no recent specialist review, and nobody having discussed the risk with the family.

Most of those failings are organisational rather than clinical. They are about whether the protocol is written, whether staff are trained and signed off, whether the diary is completed at the time, and whether anyone looks at the trend. Those are things a service controls.

What are the main types of seizure?

Seizures are classified by where they start in the brain. Focal seizures start in one area and may or may not affect awareness. Generalised seizures involve both sides from the start and include tonic-clonic, absence, myoclonic, tonic, atonic and clonic types. A focal seizure can spread and become a bilateral tonic-clonic seizure.

Staff do not need to classify seizures, and should not try. Staff need to describe what they see accurately enough for a clinician to classify it. The reason type matters at all in a service is that the response differs: a tonic-clonic seizure has a timed rescue medication threshold, an atonic seizure carries a high injury risk and may need head protection, and absences may be so brief that they are recorded as the person being vacant or not listening.

Most people in learning disability services have more than one seizure type, and the protocol must name each of them separately with its own response. A protocol that says give buccal midazolam after five minutes, with no distinction between seizure types, is unsafe.

At a glance: seizure types and what staff do

Describing and timing a seizure accurately

An accurate seizure record answers six questions: when it started, what the person was doing beforehand, exactly what happened in what order, how long it lasted, what was given and at what time, and how long recovery took. Everything a neurologist can do with the record depends on those six.

Time it from the start with a phone or a watch, not by estimate. Seizure duration is systematically overestimated by observers, often by a factor of two or three, and the entire rescue medication threshold depends on a real number. Say the time out loud when it starts so a second worker can confirm it.

Describe rather than interpret. Not had a fit, but stiffened, fell backwards, arms and legs jerking rhythmically, eyes open and rolled up, blue around the mouth, wet himself, stopped after 90 seconds, breathing noisily, unresponsive for 6 minutes, confused and asking for his mother for 30 minutes after. A neurologist can work with the second version. Where the family or the service can safely film a seizure on a phone, with consent recorded, that is often the single most useful thing brought to clinic.

The seizure diary

A seizure diary records every seizure as it happens, with date, time, type, duration, what happened before, medication given, injury and recovery time. Its purpose is to show change over time, and it only works if it is completed at the time rather than reconstructed later.

The minimum fields worth holding for each event are: date and start time; seizure type as named in this person's protocol; duration in minutes and seconds; where the person was and what they were doing; possible trigger; whether rescue medication was given, what, how much, at what time and by whom; injury; recovery time; and who witnessed it. If a seizure was not witnessed from the start, record that too, because an unwitnessed seizure with an unknown start time is a different risk.

Then use the counts. A monthly total by type is the single most useful output, and a rising count is the trigger for a review rather than something to notice at the annual appointment. Electronic recording earns its place here: a paper chart cannot total itself or alert anyone. Whether the person lives in a registered home or their own tenancy, the seizure record has to travel with them, and providers running both usually want their supported living software and their residential records to hold seizures the same way.

What triggers seizures?

The most common triggers in a care setting are missed or late medication, poor sleep, illness and fever, constipation, dehydration, stress, and menstruation. Photosensitivity gets the attention but affects only a small minority of people with epilepsy.

Missed medication is the one services own entirely. A dose given two hours late, a dose refused and not followed up, a supply that ran out over a bank holiday, or a hospital admission where the home regime was not continued are all common and all preventable. Anti-seizure medicines are time critical and should be treated that way on the round, with a narrow window and an escalation if a dose is missed. Our guides to MAR chart codes and medication errors cover the recording.

Constipation is an under-recognised trigger and is near universal in this population, so a bowel chart is part of epilepsy management, not a separate thing. So is sleep: record disturbed nights, because a run of poor sleep often precedes a cluster. Some prescribed medicines lower the seizure threshold, including certain antipsychotics and tramadol, which is a reason to bring the full medication list to every epilepsy review.

Anti-seizure medication in learning disability services

People with a learning disability are more likely to be on more than one anti-seizure medicine and more likely to have drug-resistant epilepsy. Common medicines include levetiracetam, lamotrigine, sodium valproate, carbamazepine, clobazam, topiramate and phenytoin, and each has side effects that matter here.

Side effects are frequently missed because they present as behaviour. Levetiracetam can cause irritability, aggression and low mood. Topiramate can cause word-finding difficulty and weight loss. Phenytoin causes gum overgrowth. Sedation from any of them looks like the person being tired or less engaged. Where behaviour changes after a dose change, record the dates of both and take them to the prescriber together.

Sodium valproate carries specific restrictions in women and girls of childbearing potential because of the risk of serious harm in pregnancy, and there are prescribing restrictions in men as well. Any woman of childbearing potential on valproate must be under a pregnancy prevention programme with annual specialist review and documented risk acknowledgement, and services should check that this is in place rather than assume it.

Rescue medication: what it is and when it is used

Rescue medication is a benzodiazepine given during a prolonged or clustering seizure to stop it before it becomes status epilepticus. In the UK the usual choice is buccal midazolam, with rectal diazepam still used in some cases.

It is not a PRN in the ordinary sense. It is an emergency intervention with a specific threshold, and the threshold is set by the prescriber for that person. For some people it is a tonic-clonic seizure lasting five minutes. For others it is three seizures in an hour, or a second seizure without recovery, or a seizure of a particular type. The protocol must say, in one sentence a worker can read under pressure, exactly when it is given.

The wider principles of as-required medication apply, including the requirement for a written protocol and a recorded outcome, and our guide to PRN medication protocols covers those. But rescue medication needs its own document, its own training and its own annual competency check.

Buccal midazolam: what the protocol must say

A buccal midazolam protocol must be individual, signed by the prescriber, and specify at least eleven things. Anything missing is a gap that becomes visible at the worst possible moment.

• The person's name, photograph and date of birth.
• Which seizure types the protocol applies to, described in this person's terms.
• The exact threshold for giving it, in minutes or in number of seizures.
• The dose in milligrams and the volume, and the strength of the preparation held.
• The route and how to administer it, including splitting the dose between both cheeks.
• Whether a second dose is permitted, after how long, and on whose authority.
• The maximum dose in 24 hours.
• Exactly when to call 999, including after a second dose.
• What to expect afterwards, including sedation and respiratory depression.
• What to record and who to inform.
• The review date and the prescriber's name and signature.

Adult doses are commonly 10mg, but they are individual and must never be assumed from another resident's protocol. Midazolam oromucosal solution is a controlled drug, so storage, stock recording and disposal follow controlled drug procedures, and the protocol should say where it is kept and who holds the key. It must also travel with the person to the day service, on outings and to hospital.

Giving buccal midazolam in practice

Buccal midazolam is given into the space between the gum and the cheek, not swallowed. With the person on their side where possible, insert the syringe tip between the lower gum and the cheek and give the dose slowly, splitting it roughly half into each side if the volume is large.

Do not put fingers in the mouth. Do not try to open clenched teeth. If the person's jaw is clamped, the medicine can still be placed in the outer cheek space. Note the exact time it was given and start timing again from that point, because the next decision depends on it.

Watch breathing afterwards. Midazolam causes sedation and can cause respiratory depression, so the person must be observed continuously until they are fully recovered, in the recovery position, with airway and breathing checked. Record the time given, the time the seizure stopped, the level of consciousness afterwards and the observations. If breathing becomes slow, shallow or noisy, call 999.

Training and competency for rescue medication

Only staff who have been trained and assessed as competent for that specific person may give rescue medication. Generic epilepsy awareness training is not enough, and neither is a certificate from three years ago.

The training should cover epilepsy and seizure recognition, this person's protocol, the administration technique practised on a model, what to observe afterwards, the emergency thresholds, and the recording. Competency should be assessed by someone qualified to do so and refreshed annually. Keep the record of who is signed off for whom, with dates, and use it to build the rota.

The practical consequence is a rota rule: at least one competent worker on every shift, including nights and weekends, and no shift covered entirely by staff who cannot give the medication. Services get caught out by agency cover and by sickness on a Sunday. Tracking competency against each person, and being able to see at a glance whether tonight's shift is covered, is exactly the kind of thing care compliance software should be flagging before the shift starts rather than after an incident. Our guide to mandatory training covers the wider matrix.

What is status epilepticus?

Status epilepticus is a convulsive seizure lasting five minutes or longer, or repeated seizures without the person recovering consciousness in between. It is a medical emergency with a significant mortality rate, and the risk of brain injury rises the longer it continues.

Five minutes is the operational definition that services work to, and it is the reason timing matters so much. The older idea that a seizure has to last thirty minutes to count is out of date and dangerous. Treat five minutes as the point at which this is no longer a seizure that will stop by itself.

Non-convulsive status also exists and is much harder to spot: prolonged confusion, unresponsiveness, or a person who simply is not coming back to themselves after a seizure. If a person has not returned to their normal state within the time their protocol says is usual, that needs urgent medical assessment even though nothing dramatic is happening.

When to call 999

Call 999 for any convulsive seizure lasting five minutes or more, for repeated seizures without recovery in between, for a first ever seizure, for a seizure resulting in injury or occurring in water, for breathing difficulty after a seizure, and when the person does not return to their normal state.

Also call after giving rescue medication if the protocol says so, if a second dose is needed, or if the seizure continues after the dose. Some individual protocols set a different threshold because the person routinely has longer seizures with a known safe pattern, and where that is the case it must be written down and signed by the prescriber, not carried in the team's heads.

Give the ambulance crew the seizure protocol, the medication list, the time the seizure started, the time rescue medication was given and the dose, and the hospital passport. Send a worker who knows the person. Our guide to hospital passports covers what the passport should contain.

Post-ictal care and recovery

After a seizure the person needs to be placed in the recovery position, checked for injury, kept warm and observed until fully recovered. The post-ictal period can last minutes or many hours, and the person may be confused, exhausted, agitated, aggressive, incontinent or temporarily unable to speak or move part of their body.

Post-ictal confusion is frequently mistaken for behaviour, and the wrong response makes it worse. The right response is quiet, low stimulus, minimal demands, no questions, and a familiar person present. Record how long recovery took, because a lengthening recovery time is a meaningful clinical change.

Check for injury every time, including the mouth and tongue, the back of the head, the shoulders and the hips. Record findings on a body map. Where a head injury is suspected or the person is on an anticoagulant, seek medical advice.

Recording after a seizure

Complete the seizure record before the end of the shift, while the detail is accurate, and complete an incident record as well where there was an injury, rescue medication was given, or an ambulance was called.

Tell the people who need to know: the oncoming shift at handover, the family or representative according to the agreed arrangement, the GP or epilepsy nurse if the pattern has changed, and the local authority or CQC where the incident meets the notification threshold. A seizure that results in an injury requiring hospital treatment, or a death, is notifiable. Our guide to incident reporting covers the thresholds.

Then review. Any change in pattern, any first use of rescue medication in a long period, any cluster, and any injury should trigger a look at the last three months of the diary rather than being filed as a single event.

What is SUDEP and should services discuss it with families?

SUDEP is sudden unexpected death in epilepsy: a sudden death in someone with epilepsy where no other cause is found. It causes around 1,000 deaths a year in the UK, and people with a learning disability are at higher risk. It should be discussed openly with the person and their family, not avoided.

The known risk factors are generalised tonic-clonic seizures, particularly frequent ones; nocturnal seizures; sleeping alone or unsupervised at night; poor seizure control; not taking medication as prescribed; frequent medication changes; young adulthood; and a learning disability. Most of those are recognisable from a service's own records.

NICE guidance is clear that the risk of SUDEP should be discussed as part of epilepsy care and reviewed at least annually. Services sometimes avoid it because it seems frightening or because they assume the neurologist has done it. Ask, record whether it has been discussed and when, and if it has not, raise it at the next appointment. Families almost always say afterwards that they wanted to know.

Reducing SUDEP risk

SUDEP risk is reduced mainly by reducing tonic-clonic seizures, which means getting medication right, taken on time, and reviewed by a specialist when control changes. Everything else is secondary to that.

The practical measures a service can take are: give anti-seizure medication within a narrow time window and escalate every missed dose; never allow a supply to run out; make sure someone attends epilepsy review appointments with real data; review night-time arrangements for anyone with nocturnal seizures; and use an annual structured risk review such as the epilepsy risk checklists produced by SUDEP Action.

Record the risk assessment and the discussion as part of the care plan, with a date and a review date. That record is both good practice and the evidence that the service took a known risk seriously.

Night-time monitoring and seizure alarms

Most SUDEP deaths happen at night and unwitnessed, so night arrangements are a core part of epilepsy risk management. The options run from waking night staff and regular checks through to bed sensors, audio monitors, video monitoring and specialist seizure detection devices.

No device detects every seizure type. Movement-based sensors detect tonic-clonic seizures reasonably well and miss most others. Whatever is used, the decision must be individual, recorded, and balanced against privacy and dignity, because a camera in a bedroom is a significant restriction.

Where monitoring is used, record the least restrictive option considered, the capacity assessment or best interests decision, who can view the images or data, how long it is kept, and the review date. Document night checks with actual times, and specify what the worker must confirm on each check, because looking through a door at a person who is lying still is not a check on breathing.

Risk assessment: water, cooking, roads and stairs

Epilepsy risk assessment has to be specific to the person's seizure types, their warning, their frequency and the time of day they occur, and it has to enable a life rather than prevent one. A blanket rule that nobody with epilepsy has a bath is not a risk assessment.

The standard areas to cover are bathing and showering, swimming, cooking and hot drinks, stairs, road safety, being alone, heights, and travel. For each, record the specific risk for this person, the control measures, who agreed them and when they are reviewed. Showering with a supervised door and a thermostatic valve is usually safer than a bath. Cooking may be possible with an induction hob and a support worker present. Being alone for an hour may be perfectly reasonable for someone whose seizures only happen in sleep.

Write the positive side too: what this person can do, so that a new worker does not over-restrict out of anxiety. Our guide to risk assessments in social care has the format.

What does a neurologist actually want to see at clinic?

A neurologist wants numbers and description: how many seizures of each type per month for the last six to twelve months, how long they last, what time of day they happen, what medication has been given and whether any doses were missed, how often rescue medication was used, any injuries, and any side effects. An impression that things are about the same is close to useless.

Take a printed or emailed summary containing the monthly seizure count by type in a table, the current medication list with doses and any recent changes with dates, the number of rescue medication administrations and the dates, any hospital admissions, recorded triggers including sleep and bowels, side effects observed, weight, and any video of a typical event with consent recorded. Add the two or three questions the team most wants answered.

Send the summary ahead of the appointment where you can, and send a worker who knows the person rather than whoever is free. Record the outcome in the care plan the same day, including any dose change, the date it starts, and what to watch for. A learning disability care management platform that can produce a twelve-month seizure summary in one click changes what happens in that appointment, because the conversation moves from what staff remember to what actually happened.

Worked example: Marcus and the rising count

Marcus is 34, has a severe learning disability, is autistic and has epilepsy with two seizure types: focal impaired awareness seizures and tonic-clonic seizures. His protocol sets buccal midazolam 10mg at five minutes for a tonic-clonic seizure, with 999 if it continues after ten.

Over three months his monthly tonic-clonic count went from two, to four, to seven. Each individual seizure had been recorded properly and nobody had panicked, because in any single week the change was invisible. The count only became obvious when the manager pulled the twelve-month graph for his review.

The service requested an urgent epilepsy nurse review and took the summary: counts by type by month, three rescue medication administrations in the last month against none in the previous six, disturbed sleep recorded on eleven nights, and a bowel chart showing a run of four-day gaps. The nurse adjusted his medication and treated the constipation. Two months later the count was back to two. Nothing clever happened. Somebody added the numbers up.

Worked example: Priya and the missed dose

Priya is 36, has PMLD and is PEG fed, and takes three anti-seizure medicines. Her morning dose is due at 08:00 and her protocol treats it as time critical with a 30 minute window.

On a Saturday with agency cover, the morning dose was given at 10:40 because the worker was unfamiliar with the PEG regime and waited for the senior. It was recorded as given, with no note of the time being late, because the paper chart only had a signature box. Priya had a cluster of seizures that afternoon and needed rescue medication for the first time in five months.

The service changed three things. Time critical medicines are now flagged on the round with the actual administration time recorded and a late alert to the senior. Every agency worker on that house is inducted on the PEG regime before the shift, with a signed record. And the seizure diary now shows medication timing on the same screen as the seizure events, so the connection is visible in seconds rather than after an incident investigation.

Common mistakes

• Estimating seizure duration instead of timing it, which almost always overstates it.
• Recording had a fit rather than describing what happened in order.
• A generic rescue medication protocol copied between residents rather than signed for the individual.
• Rescue medication kept locked in the office when the person is in the garden or at a day service.
• No competent worker rostered on a night or weekend shift.
• Treating anti-seizure medication as a routine dose rather than time critical.
• No bowel or sleep record, so two of the commonest triggers are invisible.
• Post-ictal confusion managed as challenging behaviour.
• Attending neurology with an impression rather than a printed count by type by month.
• Never discussing SUDEP with the person or the family, and having no record that anyone did.

What good looks like on inspection day

An inspector asks a support worker what they would do if this person had a seizure. The worker describes the two seizure types by the names used in the protocol, says the threshold for rescue medication, says where the medication is kept and that they are signed off to give it, and says when they would call 999. They show the protocol on their phone, signed and in date.

The inspector looks at the seizure records and finds start times, durations in minutes and seconds, descriptions rather than labels, recovery times, and a monthly count by type. They find the last neurology appointment with a summary that was sent ahead, the outcome recorded the same day, and the dose change with the date it started. They find three rescue medication administrations, each with an incident record, a body map and a notification where required.

Then they ask about SUDEP, and the manager shows a dated record of the discussion with the family, an annual risk review, and the night-time arrangements with the capacity decision behind them. That is the evidence inspectors look for. If you want to see how seizure diaries, rescue protocols and competency records sit together, book a demo.

Final conclusion

Epilepsy in a learning disability service is managed well or badly according to a handful of unglamorous habits. Time every seizure with a watch. Describe what you see rather than naming it. Write an individual rescue medication protocol, train people on it and check competency every year. Treat anti-seizure medication as time critical and chase every missed dose. Record bowels and sleep, because they are triggers. Add up the monthly counts and act on a rise rather than waiting for the annual appointment. Talk about SUDEP and write down that you did. None of it is complicated and all of it takes discipline, which is why the services that do it well are the ones where the recording makes it easy rather than relying on anyone's memory at the end of a long shift.

Frequently asked

How long does a seizure have to last before it is an emergency?

Five minutes. A convulsive seizure lasting five minutes or longer, or repeated seizures without recovery of consciousness in between, is status epilepticus and is a medical emergency. The older idea that thirty minutes is the threshold is out of date. Time seizures with a watch rather than estimating.

When should buccal midazolam be given?

Only at the threshold set in that person's individual protocol, signed by their prescriber. For many people that is a tonic-clonic seizure lasting five minutes, but for others it is a number of seizures in a period or a second seizure without recovery. Never apply another resident's protocol.

How is buccal midazolam administered?

Into the buccal cavity, between the gum and the cheek, not swallowed. Place the person on their side where possible, insert the syringe tip between the lower gum and the cheek and give the dose slowly, splitting it between both sides if the volume is large. Never put fingers in the mouth or try to open clenched teeth.

What should a seizure diary record?

Date, start time, seizure type as named in the person's protocol, duration in minutes and seconds, what the person was doing beforehand, possible trigger, any rescue medication with drug, dose, time and administrator, any injury, recovery time, and who witnessed it. Complete it at the time, not at the end of the shift.

What is SUDEP and should we talk about it with families?

Sudden unexpected death in epilepsy: a sudden death where no other cause is found. It causes around 1,000 deaths a year in the UK and people with a learning disability are at higher risk. NICE guidance says the risk should be discussed and reviewed at least annually, and services should check it has happened rather than assume the neurologist did it.

What increases the risk of SUDEP?

Frequent generalised tonic-clonic seizures, nocturnal seizures, sleeping alone or unsupervised, poor seizure control, not taking medication as prescribed, frequent medication changes, being a young adult, and having a learning disability. Reducing tonic-clonic seizures is the main way to reduce the risk.

Who can give rescue medication in a care service?

Only staff who have been trained and assessed as competent for that specific person, with the competency refreshed annually and recorded. Generic epilepsy awareness training is not sufficient. The rota should guarantee at least one competent worker on every shift, including nights and weekends.

What should we take to an epilepsy clinic appointment?

A monthly seizure count by type for the last six to twelve months, the current medication list with doses and dated changes, every rescue medication administration, hospital admissions, recorded triggers including sleep and bowels, observed side effects, weight, any video of a typical event with consent recorded, and the two or three questions the team wants answered.

Sources

• NICE guideline NG217 epilepsies in children, young people and adults
• Epilepsy Action: guidance for care and support settings
• SUDEP Action: epilepsy risk checklists and annual risk review tools
• Royal College of Psychiatrists: epilepsy and intellectual disability
• MHRA: valproate pregnancy prevention programme and prescribing restrictions
• LeDeR: Learning from Lives and Deaths annual reports
• Misuse of Drugs Regulations 2001
• Resuscitation Council UK: adult basic life support