Epilepsy and Learning Disabilities: Supporting People in Care and Supported Living

Around one in five people with a learning disability also have epilepsy, compared with roughly one in 100 of the general population. Seizures in this group are more likely to be missed, misattributed or under-treated, and epilepsy is one of the leading avoidable causes of death among people with a learning disability. Well-trained staff, accurate recording and an individual support plan are what close that gap.

How common is epilepsy in people with a learning disability?

Around one in five people with a learning disability also have epilepsy. Epilepsy Action puts the figure at approximately 22 in every 100, against around one in 100 people in the general population.

Prevalence rises with the degree of learning disability. Mencap reports that among people with profound and multiple learning disabilities, epilepsy affects around one in two.

For providers, the implication is direct. In supported living, residential care and day services for people with learning disabilities, epilepsy is not an occasional consideration. It is core business, and staff competency should be planned on that basis.

Why seizures get missed

Seizures are harder to identify in this group for reasons that are largely structural rather than clinical.

Diagnostic overshadowing. NHS England defines this as symptoms of physical or mental ill health being wrongly attributed to a person’s learning disability or autism, leading to delayed diagnosis or treatment. Staring episodes read as inattention. Sudden drops read as clumsiness. Post-seizure confusion reads as behaviour.

Communication differences. A person who does not use speech cannot report an aura, describe what a seizure felt like, or say that something has changed. Seizure descriptions depend almost entirely on staff observation.

Staff turnover. Recognising a subtle seizure requires knowing the person’s baseline. High turnover erodes exactly that knowledge, and agency staff may have never seen the person on an ordinary day.

Seizure types that do not look like seizures. Absence and focal seizures are frequently unrecognised. Our article on non-convulsive seizures covers what to watch for.

What the mortality data shows

The consequences of missed and poorly managed epilepsy are measurable.

The LeDeR 2024 report, published by King’s College London in July 2026, found epilepsy was the third most common avoidable cause of death among adults with a learning disability, accounting for 9.4% of avoidable deaths. The comparable figure in the general population is 0.5%.

The report links excess deaths to poor quality care and gaps in service provision, not to the epilepsy itself. That is the important point for providers: this is a gap that competent, well-supported staff can narrow.

Sudden unexpected death in epilepsy is part of that picture. Our article on SUDEP covers the known risk factors, the most significant being uncontrolled tonic-clonic seizures.

Recognising seizures where communication is limited

Where a person cannot describe what is happening, recording becomes the diagnostic tool. Staff observations are what the epilepsy specialist nurse or neurologist has to work with.

Good practice includes:

• Establishing a clear baseline. What is this person’s ordinary presentation, alertness and routine?
• Recording objectively. Describe what was observed, not what it was assumed to be. “Stared ahead, unresponsive for approximately 20 seconds, did not respond to name” is useful. “Had a funny turn” is not.
• Timing everything. Onset, duration and recovery time.
• Noting the aftermath. Confusion, tiredness, headache, injury, incontinence.
• Using body maps for unexplained injuries, which may indicate unwitnessed seizures.
• Tracking patterns across shifts, including time of day, proximity to medication rounds, illness and menstrual cycle.

What good support looks like

NICE guideline NG217 recommends that all adults with epilepsy have regular monitoring reviews at least annually. It also sets out specific considerations for people with a learning disability, including taking account of their information and support needs, supporting access to a tertiary epilepsy service where additional specialist input is needed, and reviewing cognitive function and learning disability as part of routine epilepsy management.

In England, anyone aged 14 or over with a learning disability is entitled to be offered an annual health check. Where the person has epilepsy, that check is an opportunity to review seizure control and medication that should not be missed.

Providers should be able to evidence:

• An individual epilepsy support plan for every person who needs one
• Named staff signed off as competent to administer prescribed emergency medication
• Consistent seizure recording that actually reaches the clinical team
• Hospital or communication passports that describe the person’s epilepsy
• Refresher training at defined intervals, not training delivered once at induction

Our guidance on support planning and on what CQC inspectors look for sets out how this is assessed in practice.

Consent, capacity and emergency medication

Emergency medication such as buccal midazolam is prescribed for a specific person in specific documented circumstances, and must only be given by staff assessed as competent.

Where a person may lack capacity to consent, the legal framework differs across the UK. The Mental Capacity Act 2005 applies in England and Wales. Scotland has the Adults with Incapacity (Scotland) Act 2000. Northern Ireland has the Mental Capacity Act (Northern Ireland) 2016, which is only partially commenced, with the deprivation of liberty and research provisions in operation since 2019 and the remainder not yet in force.

Capacity is decision-specific and must be assessed at the time. Our article on capacity and consent explores this further.

Frequently asked questions

Why is epilepsy more common in people with a learning disability?
Both frequently share an underlying cause affecting brain development or function, such as a genetic difference or an early brain injury.

Is seizure control harder to achieve?
Seizures in this group are more likely to be drug-resistant, which is one reason specialist review matters.

Who should be trained?
Everyone providing direct support, including bank and agency staff. Emergency medication requires separate signed-off competency.

How often should training be refreshed?
Annually is the common standard, and more often where staff turnover is high.

Specialist epilepsy training for learning disability services

One in five of the people your teams support may have epilepsy. National Epilepsy Training delivers epilepsy awareness and emergency medication training built for care and supported living settings, including recognition where communication is limited, accurate recording and signed-off staff competency.

Explore support staff training