Epilepsy and Learning Disability: Why Risk Is Higher and What Services Must Get Right

In short: Around a fifth to a quarter of people with a learning disability also have epilepsy, compared with roughly 1 in 100 of the general population, and their seizures are far more likely to resist treatment. The 2024 LeDeR annual report found epilepsy accounted for 9.4% of avoidable deaths among adults with a learning disability, against 0.5% in the general population. The gap is driven less by epilepsy itself than by care quality: missed seizures, delayed escalation, generic protocols and untrained staff. Services close it through individualised support plans, accurate recording, annual epilepsy review and competent staff.

How common is epilepsy among people with a learning disability?

Far more common than in the general population, and the prevalence rises with the severity of the learning disability. The Royal College of Psychiatrists’ report Management of epilepsy in adults with intellectual disability (CR203) puts prevalence at between 22% and 26%, rising from roughly 10% in people with a mild learning disability to around 30% in those with a moderate, severe or profound learning disability. UK general population prevalence is about 1 in 100.

Seizure control is also harder to achieve. CR203 reports that two-thirds of people with a learning disability and epilepsy respond poorly to anti-seizure medications (ASMs). For a registered manager, that has a practical consequence: in this population, ongoing seizure activity is the norm rather than a sign that something has recently gone wrong, so services cannot rely on “no seizures” as the marker of good care.

What this means for a service

• Assume a meaningful proportion of the people you support will have both a learning disability and epilepsy.
• Expect breakthrough seizures, adjusted ASM regimes and more frequent specialist input.
• Treat epilepsy as a standing risk to be actively managed, not a background note in a file. Epilepsy also frequently sits alongside other diagnoses, as covered in our overview of epilepsy comorbidities and co-occurring conditions and in the link between autism and epilepsy.

What is diagnostic overshadowing?

Diagnostic overshadowing is when a symptom is wrongly attributed to a person’s learning disability rather than investigated as a separate health problem. In epilepsy care it is one of the most consequential errors a service can make.

Two patterns recur. The first is seizure activity being read as behaviour. Absence seizures, focal seizures with altered awareness and brief tonic events can look like staring, non-compliance, withdrawal or agitation. CR203 notes that repetitive stereotyped movements are common in this population, which makes the distinction genuinely difficult without careful observation.

The second is ASM side effects being read as the person’s baseline. Sedation, unsteadiness, irritability, appetite change and cognitive slowing can all follow a dose change, yet get recorded as “he has been quiet this week” and never reach the prescriber. NICE’s visual summary on epilepsy and learning disabilities, which accompanies guideline NG217, is explicit that people with a learning disability should be offered the same epilepsy treatments as everyone else, including assessment for surgery where clinically appropriate. Overshadowing quietly removes that equality of access.

The discipline to build in: any new or changed presentation is treated as a health question until a clinician says otherwise.

How should staff record and escalate seizure changes?

Record what was observed, not what it was assumed to be, and escalate any change in pattern rather than any single event. Where a person is non-verbal or has limited speech, staff observation is the primary clinical evidence available to the neurologist or epilepsy nurse.

What a usable seizure record contains

1. Date, start time and end time. Duration decides emergency response, so it must be timed, not estimated afterwards.
2. What was seen, in plain description. Which limbs, which side, eyes open or closed, colour change, sounds, incontinence.
3. What came before. Illness, poor sleep, missed dose, constipation, menstruation, heat, a change of environment.
4. Recovery. How long until the person returned to their normal presentation, and what that normal is for them.
5. Any medication given, including rescue medication, with the time.
6. Who witnessed it. Named, not “staff”.

Video, where the person or their representative has consented and it is recorded in line with your policy, is valuable diagnostic evidence.

When to escalate

Escalate to the GP, epilepsy nurse or specialist when seizures increase in frequency, change in type or duration, cluster, start occurring in sleep when they did not before, or when recovery times lengthen. Escalate after any ASM change if presentation shifts. Do not wait for a review date. Changes must also survive the shift boundary, which is why what gets communicated at handover in epilepsy care is a safety issue rather than an administrative one.

Emergency response must be unambiguous

Call 999 immediately if:

• A convulsive seizure lasts longer than 5 minutes.
• One seizure follows another without the person recovering awareness in between.
• The person has difficulty breathing, or does not regain consciousness after the seizure ends.
• The person is seriously injured, or the seizure happens in water.
• It is the person’s first known seizure, or the seizure is different from their usual pattern.

If rescue medication is prescribed, it is given only by staff trained and assessed as competent, at the time and dose specified in that person’s individual protocol, and 999 is called if the seizure does not stop as the protocol states. Our guidance on status epilepticus and prolonged seizures and on clear criteria for calling 999 sets this out in full.

What has LeDeR found about epilepsy-related deaths?

LeDeR, the programme that reviews the lives and deaths of people with a learning disability and autistic people in England, has repeatedly identified epilepsy as a leading avoidable cause of death. The findings should be read soberly: they point to fixable gaps in care.

The 2024 LeDeR annual report found that epilepsy accounted for 9.4% of avoidable deaths among adults with a learning disability, compared with 0.5% in the general population. Among adults with a severe or profound learning disability, the figure was 13.4%. The report is direct that excess epilepsy-related deaths are not explained by epilepsy alone, but are associated with poor quality care and gaps in service provision, and it identifies regular review and medication optimisation through a multidisciplinary approach as measures shown to reduce mortality.

The wider mortality picture provides context. King’s College London reported a median age at death of 62.8 years for adults with a learning disability against 81.8 years in the general population, with 39.0% of deaths classed as avoidable compared with 21.1%.

Services supporting someone with a learning disability and epilepsy should therefore treat SUDEP risk discussion as a routine part of care planning, not a difficult conversation to be avoided. Our page on sudden unexpected death in epilepsy (SUDEP) covers how to raise it appropriately.

Why must epilepsy be part of the annual health check?

Because the learning disability annual health check is often the only reliable annual point of clinical contact, and NICE expects epilepsy to be reviewed at least annually in any case. Anyone aged 14 or over with a learning disability who is on their GP’s learning disability register is eligible.

The check should not pass without epilepsy being addressed. Practically, that means the service arrives prepared.

Take to the appointment:

• Twelve months of seizure records, summarised by type and frequency.
• Every ASM change made in the year and what followed it.
• All rescue medication administrations, with outcomes.
• Any hospital attendances, injuries or near misses.
• Current questions: is this regime still right, when was the last specialist review, is a referral needed?

If epilepsy is not reviewed, ask why, and record that you asked. The resulting health action plan should feed directly into the person’s support plan.

What should hospital passports and reasonable adjustments cover?

A health and care passport carries the information a hospital or clinician needs to treat someone safely when they do not know them, and reasonable adjustments are a duty under the Equality Act 2010, not a courtesy. NHS England’s health and care passports implementation guidance is clear that a passport belongs to the person, supports personalised care, and is not a replacement for clinical records or a care plan.

For someone with epilepsy, the passport needs to state how they communicate distress and pain, what their usual seizure presentation looks like, what their normal baseline is, their current ASMs and rescue protocol, and who knows them well enough to be believed about changes.

Reasonable adjustments in epilepsy care commonly include longer appointments, easy read or audio information, a familiar supporter present, and quieter environments. NICE’s visual summary names longer appointments and alternative information formats specifically.

Why does a generic seizure protocol fail?

Because a generic protocol describes epilepsy in general, and staff have to respond to one person’s seizures in particular. A document that says “call 999 if the seizure is prolonged” leaves a support worker deciding, alone, what prolonged means for this individual.

An individualised epilepsy support plan should state:

• The person’s seizure types, in observable language, with what each one actually looks like for them.
• Usual duration and usual recovery, so deviation is recognisable.
• Known triggers and patterns, including time of day and cycle.
• Exact rescue medication instructions: drug, dose, route, the timed trigger for giving it, and the timed trigger for calling 999 if it does not work.
• Named escalation contacts, with out-of-hours arrangements.
• Positional and environmental risk management, including bathing, water, night-time monitoring and sleep safety, with any decisions recorded and reviewed.
• Capacity and best interests decisions, recorded in line with the Mental Capacity Act 2005 where the person cannot consent to a specific decision.
• Review date and trigger events for early review.

Our guidance on the importance of care planning in epilepsy covers how to build and maintain these plans, and on how rescue medication works for the medication element.

How does STOMP apply to epilepsy?

STOMP, NHS England’s programme to stop the over medication of people with a learning disability and autistic people, covers psychotropic medications including antipsychotics, antidepressants, benzodiazepines, sedatives, stimulants and anti-seizure medications. NHS England states that in 2025 people with a learning disability were thought to be 15 times more likely than the general population to be prescribed an antipsychotic.

The relevance to epilepsy is direct. Where behaviour changes are not properly investigated, two errors become possible: unrecognised seizure activity or ASM side effects get medicated as behaviour, and medication accumulates without anyone revisiting whether it is still needed. Both are the same failure of curiosity.

STOMP does not mean stopping prescribed medication. Only the prescriber decides that. What a service can do is document behaviour changes precisely, flag their timing against dose changes, ask at every review what each medication is for and whether it is still working, and make sure the person’s own communication is being interpreted rather than managed.

What training and competency does a service need?

Both epilepsy-specific competence and learning disability competence, evidenced rather than assumed. Since 1 July 2022, under the Health and Care Act 2022, all CQC registered providers must ensure staff receive training on learning disability and autism appropriate to their role, and CQC assesses whether staff are competent, not only whether training was booked.

Epilepsy training sits alongside that. CR203 states plainly that supporting people with a learning disability and epilepsy requires high levels of competence and confidence in community staff.

A defensible position for a registered manager looks like this:

• All staff supporting a person with epilepsy trained in seizure recognition, first aid, recording and escalation.
• Rescue medication administration trained and separately competency assessed, with records held.
• Person-specific induction on each individual support plan, not generic training alone.
• Refresher training at a defined interval, with attendance tracked.
• Evidence that training changed practice: audited records, handovers, escalations.

Inspectors look for exactly this alignment between plan, practice and record, as set out in our overview of what CQC inspectors look for in epilepsy care.

Frequently asked questions

How can staff tell the difference between a seizure and behaviour linked to a learning disability?

Staff should not attempt to make that judgement clinically. Their role is to describe precisely what was seen, how long it lasted, what preceded it and how the person recovered, then escalate the pattern to the GP, epilepsy nurse or specialist. 

Does everyone with a learning disability and epilepsy need a specialist review?
NICE expects adults with epilepsy to have a review at least annually, and the visual summary accompanying NG217 identifies access to specialist epilepsy services for people needing additional support. Where seizures are frequent, changing or not responding to ASMs, specialist input should be actively pursued rather than waited for.

Can support staff give rescue medication?
Only where it is prescribed for that individual, set out in a person-specific protocol, and the staff member has been trained and assessed as competent to administer it by that route. The protocol must state the timed trigger for administration and the timed trigger for calling 999.

Is the annual health check the same as an epilepsy review?
No. The annual health check is a broad health review for people aged 14 and over with a learning disability. Epilepsy should be addressed within it, but it does not replace specialist epilepsy review or ASM optimisation where those are indicated.

Why is the mortality gap so much wider for people with a severe or profound learning disability?
LeDeR 2024 recorded epilepsy as 13.4% of avoidable deaths in that group compared with 6.4% in people with a mild or moderate learning disability. Contributing factors include more frequent and drug-resistant seizures, greater reliance on others to notice and report changes, and communication barriers that delay escalation. The report links the excess to care quality and service gaps rather than to epilepsy alone.