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Epilepsy Awareness and Seizure Management Policy

1. Purpose

The purpose of this policy is to ensure that all staff at {{org_field_name}} are trained and competent to provide safe, effective and person-centred care and support for individuals who have epilepsy and/or experience seizures.

This policy supports compliance with the Regulation and Inspection of Social Care (Wales) Act 2016 and the Regulated Services (Service Providers and Responsible Individuals) (Wales) Regulations 2017 (as amended), together with the Welsh Government Statutory Guidance for care home and domiciliary support service providers (updated 27 March 2024).

It should be read and applied alongside our safeguarding, medication management, incident reporting, record keeping, and Mental Capacity Act/consent policies to meet Care Inspectorate Wales (CIW) expectations for safe care and timely notifications of relevant events.

Clinical good practice note: Where this policy refers to seizure diagnosis, treatment choices or specialist review, staff must follow the individual’s prescribed plan and seek advice from appropriate healthcare professionals. Practice should align with current NICE guidance on epilepsy (NG217), including later updates such as valproate safety information and other published updates.

Epilepsy is a neurological condition that affects the brain and causes recurrent seizures. Seizures can vary in severity and type, and appropriate management is critical to ensuring the safety, dignity, and well-being of service users. This policy provides guidance on recognising, responding to, and managing epilepsy, ensuring that service users receive the highest standard of care while maintaining their independence and dignity.

2. Scope

This policy applies to: All staff, including care workers, managers, and coordinators, who support individuals with epilepsy. Service users diagnosed with epilepsy and their families. External healthcare professionals involved in epilepsy management.

It covers: Epilepsy awareness and understanding seizure types. Risk assessment and care planning. Safe and appropriate response to seizures. Medication administration for epilepsy management. Emergency procedures and escalation. Record-keeping and monitoring seizures. Staff training and competence development.

This policy applies to all permanent, temporary and agency staff, and any volunteers/contractors undertaking duties on behalf of {{org_field_name}} in people’s homes.

Where a person’s epilepsy support is commissioned alongside other providers, we will collaborate and share relevant information (with consent or other lawful basis) to ensure coordinated care and clear accountability.

2.1 Definitions and key documents

Seizure Action Plan / Epilepsy Care Plan: A person-specific plan that states the individual’s seizure type(s), usual presentation, known triggers, risks, recovery pattern, and exactly what staff must do (including when to administer rescue medication and when to call 999).

Rescue medication: Emergency medicine prescribed to stop prolonged or repeated seizures (e.g., buccal midazolam or rectal diazepam) which must only be administered by staff trained and assessed as competent and strictly in accordance with a person-specific written instruction.

Post-ictal phase: The recovery period after a seizure when a person may be confused, sleepy, distressed, or at increased risk of falls and aspiration.

3. Principles of Epilepsy Awareness and Seizure Management

3.1 Understanding Epilepsy and Seizure Types

Epilepsy is a condition that causes abnormal electrical activity in the brain, leading to seizures. It affects people differently, with some individuals experiencing frequent seizures and others having well-controlled epilepsy through medication.

There are different types of seizures, including: Tonic-clonic seizures (loss of consciousness, muscle stiffness, convulsions). Absence seizures (brief loss of awareness, staring episodes). Focal seizures (involuntary movements, confusion, sensory changes). Myoclonic seizures (sudden muscle jerks). Atonic seizures (loss of muscle tone, sudden falls).

All staff must be trained to recognise the type of seizures experienced by each service user and respond appropriately.

3.2 Individual Risk Assessment and Care Planning

Each service user with epilepsy must have a detailed, person-centred epilepsy care plan that outlines: The type and frequency of seizures. Known seizure triggers (e.g., stress, fatigue, flashing lights). Specific care and support needs. Medication details and emergency protocols. Individual preferences regarding care and interventions.

Risk assessments must be conducted to identify potential dangers in the home environment (e.g., fall risks, water safety, sharp objects) and ensure that appropriate precautions are in place. Care plans must be reviewed regularly or sooner if the individual’s condition changes.

Provider assessment and personal plan timescales (regulated service expectation): Within 7 days of the start of the service, the service provider will complete/confirm a provider assessment that identifies the person’s outcomes, risks (including seizure-related risks) and how these will be managed, drawing on available health information and the commissioning care and support plan.

The individual’s personal plan will be kept under review and, as a minimum, reviewed every 3 months or sooner where needs change, seizure pattern changes, medication changes, after a seizure-related injury, or following advice from health professionals. Reviews will involve the individual and (where appropriate and agreed) their representative, and the plan will be updated and re-issued as needed.

3.3 Responding to Seizures

If a service user experiences a seizure, staff must follow a structured approach to ensure their safety: Stay calm and provide reassurance. Time the seizure from the start. Protect the person from harm by removing nearby hazards. Cushion the head (if the person is on the floor) to prevent injury. Loosen tight clothing around the neck. Do not restrain the person or put anything in their mouth. Allow the seizure to run its course while ensuring a safe environment.

Once the seizure has ended: Monitor the person’s recovery, ensuring they are breathing normally. Provide reassurance and support as they regain consciousness. Record the seizure details in their care plan, including duration and any unusual symptoms. Offer medical assistance if needed.

After the seizure (post-ictal care):

• Check breathing and place in the recovery position if appropriate.
• Maintain dignity and privacy (e.g., reassure, reduce unnecessary onlookers, preserve modesty).
• Check for injuries (head injury, bleeding, suspected fracture) and provide first aid within competence; escalate for clinical advice where required.
• Do not offer food or drink until the person is fully awake and safe to swallow.
• Stay with the person until they have returned to their usual level of awareness (or as described in their plan) and document recovery time.
• Follow the person’s Seizure Action Plan (some people’s “usual” seizures may last longer/shorter than general guidance; the plan overrides generic timings unless there is immediate danger).

3.4 Emergency Response and When to Call an Ambulance

An ambulance must be called immediately if:

• The seizure lasts longer than five minutes (status epilepticus).
• The person has multiple seizures without regaining consciousness.
• The person has difficulty breathing after the seizure.
• The person sustains a serious injury.
• The seizure occurs in water or another dangerous environment.
• The person is experiencing their first-ever seizure.
• The Seizure Action Plan instructs staff to call 999 (including where rescue medication has been administered and the plan requires emergency review).
• There is a suspected head injury, repeated vomiting, severe breathing difficulty, or the person remains unresponsive longer than stated in their usual recovery pattern.
• Staff are concerned for any reason that the situation is unsafe or deteriorating.

All staff must be trained in emergency seizure management and first aid to respond effectively.

Any seizure resulting in serious injury, emergency services attendance, or death must be recorded as an incident and considered for CIW notification in line with CIW notification/record requirements.

3.5 Administration of Epilepsy and Rescue Medication

Some individuals may be prescribed rescue medication (e.g., buccal midazolam or rectal diazepam) to stop prolonged or repeated seizures. Rescue medication must only be administered where all of the following are in place:

• A current person-specific written instruction (e.g., Seizure Action Plan and prescribing direction) stating dose, route, exact trigger for administration, and escalation instructions.
• Valid consent (or a best-interest decision where the person lacks capacity) recorded in the care documentation.
• Staff training and competence: only staff who have completed epilepsy/rescue medication training and been assessed as competent may administer rescue medication; competence must be refreshed at least annually and immediately if the plan changes.
• Safe storage and availability in the individual’s home as agreed, with checks of expiry dates and clear recording of where the medicine is kept.
• Recording: every administration must be recorded immediately in the MAR and daily notes, including time given, dose, route, reason, outcome, side effects, and whether 999/clinical advice was sought.

Where a service user refuses prescribed medication or staff have concerns about side effects, interactions, missed doses or medication errors, this must be escalated the same day to the line manager and appropriate prescriber/health professional, and recorded.

Valproate safety: where valproate is prescribed, staff must be aware of and follow current safety information and escalate any concerns promptly (for example, safeguarding against pregnancy exposure risks and other MHRA-linked safety updates referenced by NICE).

3.6 Seizure Triggers and Preventative Measures

To minimise seizure risks, staff must: Identify and document known triggers (e.g., lack of sleep, missed medication, stress, flashing lights). Encourage a stable routine with proper rest and hydration. Support service users in managing stress and anxiety. Ensure medication is taken as prescribed. Create a safe environment, removing potential hazards that could cause injury during a seizure.

3.7 Supporting Well-being and Independence

Epilepsy should not limit a person’s right to live independently and participate in social activities. {{org_field_name}} supports service users by: Encouraging engagement in activities while managing safety risks. Providing emotional support and reassurance. Helping service users develop self-care strategies and independence. Ensuring service users and their families have access to epilepsy information and resources.

3.8 Record-Keeping and Monitoring Seizures

All seizures must be recorded in the service user’s care plan and daily notes, including: Date, time, and duration of the seizure. Description of seizure activity. Any triggers or warning signs observed. Actions taken by staff. Medication administered (if applicable). Service user’s condition post-seizure.

These records help healthcare professionals monitor seizure patterns and adjust care plans accordingly.

CIW notifications and regulated records:

Where a seizure results in a notifiable event (for example: serious accident/injury requiring urgent treatment, death of a person using the service, outbreak of infectious disease identified during attendance, or safeguarding matters), the manager/responsible person must ensure CIW is notified without delay in line with CIW requirements and that records are retained in accordance with CIW record-keeping guidance.

Safeguarding language: staff must follow Wales Safeguarding Procedures and organisational safeguarding policy. Where CIW documentation refers to a “protection concern” (updated notification terminology), staff must report this immediately via safeguarding and management routes.

3.9 Staff Training and Competency Development

All staff must receive comprehensive epilepsy training, including: Understanding epilepsy and seizure types. Safe seizure response and first aid. Medication administration and emergency protocols. Person-centred epilepsy care planning. Risk assessment and environmental safety. Emotional support for service users.

Training must be renewed annually, and competency assessments must be conducted to ensure staff remain confident in managing epilepsy effectively.

Training must be role-appropriate and evidenced (attendance, assessment outcome, supervised practice where required).

Any staff expected to administer rescue medication must complete specific, accredited/practical training and competency assessment for the route used (e.g., buccal), and must not administer until signed off as competent.

Learning from incidents (e.g., prolonged seizures, injuries, emergency call-outs) must be fed back into refresher training and care plan updates.

3.10 Mental capacity, consent and best interests

Staff must presume capacity unless there is evidence otherwise and must support the person to make their own decisions wherever possible. Consent for epilepsy support (including rescue medication and sharing information with family/others) must be sought and recorded.

Where a person may lack capacity for a specific decision, staff must follow the Mental Capacity Act framework (as set out in organisational policy) and ensure any act is in the person’s best interests and is the least restrictive option.

If seizure management arrangements amount to continuous supervision/control and the person is not free to leave, staff must escalate to the manager for lawful authority consideration and multi-agency review.

4. Governance, Audit and Quality Assurance

{{org_field_name}} will monitor and improve epilepsy care by:

• Auditing seizure records and incident reports to identify patterns, triggers, and improvement actions.
• Checking that personal plans are reviewed at least 3-monthly (or sooner when required) and updated after any significant change (medication change, injury, hospital attendance).
• Auditing rescue medication governance (training compliance, competency sign-off, MAR completion, expiry checks and safe storage arrangements).
• Ensuring regulated notifications are made to CIW when required and that records are complete and retrievable.
• Working with health professionals and commissioners to coordinate care where multiple providers are involved and to ensure care remains safe and outcome-focused.

5. Related Policies

This policy should be read alongside:

• Safe Care and Treatment Policy (DCW11)​
• Medication Management and Administration Policy (DCW21)​
• Risk Management and Assessment Policy (DCW18)​
• Person-Centred Care Policy (DCW07)​
• Emergency and Business Continuity Plan (DCW19)​

6. Policy Review

This policy will be reviewed annually, or sooner if there are changes in legislation, new clinical guidelines, or feedback from service users, families, or regulatory bodies.

Responsible Person: {{org_field_registered_manager_first_name}} {{org_field_registered_manager_last_name}}
Reviewed on: {{last_update_date}}
Next Review Date: {{next_review_date}}
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