Carer seizure logging: why shared access to a seizure diary matters

If you care for someone with epilepsy — as a partner, parent, family member, or professional carer — you probably witness seizures they don't remember. Tonic-clonic seizures cause unconsciousness. Absence seizures happen without the person noticing. Nocturnal seizures occur while they sleep. In all these cases, the person with epilepsy has no memory of the event — and without someone else recording it, that seizure disappears from the medical record entirely.

This is a problem. Neurologists make treatment decisions based on seizure frequency and patterns. If half the seizures aren't recorded because the person didn't know they happened, the medical picture is dangerously incomplete. Shared access to a seizure diary lets you fill those gaps.

What carers see that the person can't

As a carer, you observe things the person with epilepsy physically cannot:

• The seizure itself. What it looked like, which side of the body was affected, whether there were convulsions, eye deviation, lip smacking, or other movements.
• Duration. You can time the seizure — the person experiencing it has no sense of how long it lasted.
• Recovery behaviour. How confused were they afterwards? Did they recognise you? How long before they could speak, walk, or function? This postictal information is diagnostically important.
• Context. What were they doing when it started? Were they tired, stressed, ill? Had they missed medication? These trigger details are often invisible to the person who seized.

This information is exactly what a neurologist needs. Without it, treatment decisions are based on an incomplete dataset.

How shared access works

A seizure diary with shared access lets multiple people log seizures to the same record. When you witness a seizure, you log it from your own device — your phone, tablet, or computer — and it appears in the person's seizure history alongside their own entries. There's no need to find their phone, unlock it, or remember their password. You log the seizure from where you are, with the details you observed.

This is fundamentally different from a paper diary, which is inherently single-user. Even if you find their notebook and write in it, there's no way to distinguish your entries from theirs, and the practical barriers — finding the notebook, understanding their system, doing this while also providing post-seizure care — mean it rarely happens.

When shared access matters most

Nocturnal seizures

If you share a bed with someone who has nocturnal seizures, you may be the only person who knows these seizures are happening. Logging them creates evidence of a pattern that might otherwise go entirely undetected — potentially changing their diagnosis and treatment.

Seizures in children

Children, especially younger ones, can't reliably describe or log their own seizures. Parents, school nurses, and teaching assistants need to record what they observe. A shared digital diary means everyone involved in the child's care is logging to the same place, building a complete picture for the paediatric neurologist.

Elderly or vulnerable adults

Professional carers, family members, and support workers can all contribute to a seizure record for someone who can't maintain one independently. This is particularly important for people in residential care or those with learning disabilities alongside epilepsy.

Carer logs as PIP evidence

If the person you care for is applying for PIP, your logged entries serve as witness evidence. Each timestamped entry you make documents that you were present, that a seizure occurred, and what the impact was. Combined with their own entries, this creates a comprehensive record of seizure frequency and the supervision they require — both of which are key PIP descriptors.

A PDF report generated from the shared diary includes all entries from both you and the person you care for, making it easy to submit as supporting evidence.

How to log as a carer

When you witness a seizure, prioritise care first — help the person through the seizure safely. Once they're stable:

• Open the seizure tracker on your device
• Select the seizure type you observed
• Note the duration if you timed it
• Add notes: what you saw, how they recovered, any injuries, what they were doing before

If you can't log immediately, do it within the hour while your memory is fresh. The automatic timestamp will show when you logged it, and you can adjust the seizure time to when it actually happened.

Setting up shared access

Seizure Tracker lets you invite carers and family members to access the seizure diary. They can log seizures, view the history, and contribute notes — all from their own device. It's designed so that sharing seizure data with family is straightforward and secure.