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{{org_field_name}}

Registration Number: {{org_field_registration_no}}

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Epilepsy Awareness and Seizure Management Policy

1. Purpose

The purpose of this policy is to ensure that {{org_field_name}} provides a safe, supportive, and well-informed environment for people we support who have epilepsy. This policy ensures compliance with CQC regulations, NICE guidelines, and health and social care best practices to prevent risks and ensure appropriate care during seizures. It also establishes clear guidance for staff on identifying, responding to, and documenting seizures.

2. Scope

This policy applies to all staff, including care workers, nurses, managers, and support personnel involved in providing care for people with epilepsy at {{org_field_name}}. It covers:

• Epilepsy risk assessments and care planning.
• Training and competency requirements for staff.
• Safe administration of anti-epileptic medication.
• Responding to seizures and emergency management.
• Monitoring and documentation procedures.
• Collaboration with healthcare professionals and families.

3. Legal and Regulatory Framework

This policy must be implemented in accordance with applicable legislation, regulations and nationally recognised guidance, including:

• Health and Social Care Act 2008 and the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, as amended, including:
  • Regulation 9 – Person-centred care, requiring care and treatment to be appropriate, meet the person’s needs and reflect their preferences;
  • Regulation 10 – Dignity and respect;
  • Regulation 11 – Need for consent, requiring care and treatment to be provided with lawful consent or, where the person lacks capacity for the relevant decision, in accordance with the Mental Capacity Act 2005;
  • Regulation 12 – Safe care and treatment, including assessment and mitigation of risks, staff competence, safe use of equipment, proper and safe management of medicines and effective arrangements for clinical and medical emergencies;
  • Regulation 13 – Safeguarding service users from abuse and improper treatment;
  • Regulation 17 – Good governance, including accurate, complete and contemporaneous records and effective systems for assessing, monitoring and improving the quality and safety of care;
  • Regulation 18 – Staffing, including the requirement for staff to receive appropriate support, training, professional development, supervision and appraisal necessary to enable them to carry out their duties safely; and
  • Regulation 20 – Duty of candour, where a notifiable safety incident occurs.
• Care Quality Commission (Registration) Regulations 2009, as amended, including the requirements to notify CQC without delay of deaths, serious injuries and other specified incidents where the relevant notification criteria are met.
• Mental Capacity Act 2005 and its Code of Practice, including the presumption of capacity, decision-specific assessment of capacity, best-interests decision-making, consideration of valid and applicable advance decisions, lawful authority held by attorneys or deputies and the least restrictive approach.
• Equality Act 2010, including the duty not to discriminate unlawfully because of disability and to make reasonable adjustments where required.
• NICE Guideline NG217 – Epilepsies in children, young people and adults, including current recommendations concerning information and support, care planning and the management of prolonged seizures, repeated or cluster seizures and status epilepticus.
• NICE Guideline SC1 – Managing medicines in care homes, together with current CQC guidance on medicines management in adult social care.

{{org_field_name}} will have regard to current CQC guidance and nationally recognised evidence-based guidance when assessing, planning, delivering, monitoring and reviewing care for people with epilepsy.

4. Related Policies

This policy is linked to other care and health policies within {{org_field_name}}, ensuring comprehensive care for individuals with epilepsy, including:

• CH11 – Safe Care and Treatment Policy
• CH21 – Medication Management and Administration Policy
• CH13 – Safeguarding Adults from Abuse and Improper Treatment Policy
• CH18 – Risk Management and Assessment Policy
• CH42 – Communication and Engagement with People We Support and Families Policy

5. Policy Statement

{{org_field_name}} is committed to providing person-centred care for people with epilepsy. Our goal is to:

• Recognise epilepsy as a neurological condition requiring specialist understanding and support.
• Ensure all staff are trained to provide safe and responsive care during seizures.
• Reduce risks associated with epilepsy, including injury, prolonged seizures, and medication mismanagement.
• Promote dignity, independence, and quality of life for people with epilepsy through personalised care planning.

6. Epilepsy Risk Assessment and Care Planning

Each person with known or suspected epilepsy must receive individualised assessment, care planning and risk management appropriate to their needs. Assessment and care planning must involve the person as far as they wish and are able to participate and, where appropriate and lawful, their representative and relevant healthcare professionals.

Individual Epilepsy Risk Assessment

The person’s epilepsy risk assessment must, where relevant, identify and consider:

• their diagnosed epilepsy syndrome and known seizure type or types;
• usual seizure presentation, including what happens before, during and after a seizure;
• usual seizure duration, frequency and pattern;
• known or suspected seizure triggers;
• any history of prolonged seizures, status epilepticus or repeated or cluster seizures;
• previous injuries or other complications associated with seizures;
• risks associated with mobility, falls, bathing, showering, swimming, cooking, eating, drinking, sleeping, community activities, transport and other individually relevant activities;
• the person’s prescribed antiseizure medicines, known allergies, contraindications and significant side effects;
• whether rescue medicine has been prescribed and, if so, the circumstances, dose, route and timing in which it must be administered;
• the signs that require urgent clinical review or emergency assistance;
• the person’s ability and wish to self-manage any aspect of their epilepsy or medicines;
• environmental measures or equipment required to minimise identified risks;
• communication needs and any reasonable adjustments required;
• the person’s preferences, choices and agreed level of support; and
• any additional risks identified by the person, their representative, staff or relevant healthcare professionals.

Risk controls must be proportionate to the identified risk and must balance safety with the person’s rights, dignity, independence, preferences and quality of life. Blanket restrictions must not be imposed solely because a person has epilepsy.

Individualised Epilepsy Care Plan

Each person with epilepsy must have an up-to-date epilepsy care plan. Where there is a foreseeable risk of prolonged, repeated or cluster seizures, the care plan must incorporate or clearly reference an individualised emergency management plan prepared or agreed with an appropriate healthcare professional.

The care plan must clearly state, where applicable:

• the person’s seizure type or types and usual presentation;
• their usual seizure duration and recovery pattern;
• known triggers;
• immediate first-aid actions staff must take;
• actions staff must avoid;
• when and how rescue medicine must be administered;
• the prescribed dose, route, timing and any permitted repeat dose of rescue medicine;
• when staff must call 999;
• what observations are required during and following the seizure;
• the person’s preferred post-seizure care and support;
• who must be informed following a seizure;
• when medical advice or review must be sought;
• any agreed arrangements for activities carrying additional risk; and
• the date of the next planned review.

The epilepsy risk assessment, care plan and emergency management plan must be made readily available to staff who may be required to support the person.

They must be reviewed at planned intervals and promptly whenever there is:

• a change in seizure type, frequency, duration or presentation;
• a prolonged, repeated or cluster seizure;
• a seizure-related injury;
• administration of rescue medicine;
• an emergency hospital attendance or admission;
• a change in antiseizure medicine or rescue medicine;
• a significant medicine side effect;
• a change in the person’s physical or mental health, capacity or circumstances; or
• information indicating that existing risk controls or emergency arrangements may no longer be effective.

7. Staff Training and Competency

Staff must only undertake epilepsy-related care or treatment for which they have received appropriate training and have been assessed as competent.

Epilepsy Awareness

Staff providing direct care to a person with epilepsy must receive training appropriate to their role and the needs of the people they support. Training must include, as applicable:

• basic understanding of epilepsy;
• recognition of the seizure types relevant to people using the service;
• the person-specific signs and presentation of seizures;
• seizure first aid;
• actions that must not be taken during a seizure;
• timing and observing seizures;
• post-seizure observation and support;
• recognition of prolonged seizures, status epilepticus and repeated or cluster seizures;
• when emergency medical assistance is required;
• use of individual epilepsy care plans and emergency management plans;
• accurate recording and reporting of seizures; and
• escalation of changes or concerns to the appropriate healthcare professional.

Antiseizure and Rescue Medicines

Staff who administer antiseizure medicines must have completed the organisation’s required medicines training and have been assessed as competent before administering medicines without direct supervision.

Staff must not administer prescribed rescue medicine, including buccal midazolam or rectal diazepam, unless they:

• have received training appropriate to the medicine, route of administration and person’s individual emergency management plan;
• have been assessed as competent to administer it safely;
• understand the circumstances in which it is prescribed;
• know the prescribed dose, route and timing;
• understand when a further dose is or is not authorised;
• understand when 999 must be called; and
• know the required monitoring, recording and reporting following administration.

Competency must be reassessed at appropriate intervals and whenever there is reason to question a member of staff’s competence, including following a medicines error, significant incident, prolonged period without using the skill, change in procedure or change in the person’s prescribed rescue medicine arrangements.

Training and competency records must be maintained and available for audit.

Staff must seek advice and must not undertake a task where they do not have the necessary knowledge, training or competence to perform it safely.

8. Seizure Management and Emergency Response

a. Immediate Response to a Seizure

When a person experiences a seizure, staff must follow the person’s individual epilepsy care plan and emergency management plan where one is in place.

Staff must:

• remain calm and stay with the person;
• note and accurately time the start of the seizure;
• protect the person from immediate injury by removing avoidable hazards where this can be done safely;
• protect the person’s head from injury where appropriate;
• loosen restrictive clothing around the neck where necessary;
• preserve the person’s privacy and dignity;
• observe the nature of the seizure, including movements, awareness, breathing, colour and other relevant signs;
• follow the person-specific emergency plan regarding rescue medicine and escalation;
• after convulsive movements have stopped, assess breathing and responsiveness and place the person in the recovery position where appropriate;
• remain with the person and provide reassurance and post-seizure support until they have recovered to their usual level or appropriate healthcare assistance takes over; and
• record the seizure and all actions taken.

Staff must not:

• restrain the person’s movements during a seizure unless an immediate intervention is required to prevent serious harm and the intervention is lawful, necessary and proportionate;
• put anything into the person’s mouth;
• force food, drink or oral medicine into the person’s mouth during a seizure or before they have recovered sufficiently to swallow safely; or
• move the person unnecessarily unless they are in immediate danger.

b. Prolonged Convulsive Seizures and Status Epilepticus

A convulsive seizure lasting 5 minutes or more must be treated as a medical emergency.

Where the person has an individualised emergency management plan that is immediately available, staff must follow it, including administration of prescribed rescue medicine by a trained and competent member of staff where indicated.

Staff must call 999 in accordance with the person’s emergency management plan and must call 999 immediately where urgent emergency assistance is required.

A convulsive seizure that continues for more than 2 minutes longer than that person’s usual seizure duration must also be treated as a medical emergency in accordance with NICE guidance and the person’s emergency management plan.

c. Repeated or Cluster Seizures

Repeated or cluster seizures, typically three or more self-terminating seizures within 24 hours, must be treated as a medical emergency.

Staff must:

• follow the person’s individual emergency management plan;
• administer prescribed rescue medicine where instructed and where competent to do so;
• seek urgent medical advice or emergency assistance as specified by the person’s plan; and
• escalate any further episodes for expert clinical advice.

d. Other Circumstances Requiring Emergency Assistance

Staff must call 999 where:

• the person’s emergency management plan instructs them to do so;
• the person has serious difficulty breathing, persistent breathing problems or does not recover as expected;
• the person sustains a serious injury;
• the seizure occurs in water and there is concern about aspiration or breathing;
• staff believe the person’s life or health is in immediate danger;
• it is the person’s first known seizure and urgent medical assessment is required; or
• there is any other clinical emergency for which immediate ambulance assistance is required.

If staff are uncertain whether an ambulance is required and there is a reasonable concern about immediate safety, they must seek urgent clinical or emergency assistance rather than delay treatment.

9. Medication Management

All antiseizure medicines and prescribed rescue medicines must be managed in accordance with the person’s prescription, individual care plan, emergency management plan, the organisation’s Medication Management and Administration Policy and current legal and professional requirements.

Routine Antiseizure Medicines

Staff must:

• administer medicines exactly as prescribed and at the prescribed time, dose and route;
• follow the principles of safe medicines administration;
• accurately record administration immediately on the appropriate medicines administration record;
• report and act upon refused, omitted, delayed or unavailable doses in accordance with the medicines policy and the person’s individual care plan;
• seek appropriate clinical advice where a missed or refused dose may increase seizure risk;
• monitor for and report significant adverse effects or deterioration;
• ensure adequate supplies of prescribed medicines are available; and
• ensure medicines are stored securely and under any specified storage conditions.

The term antiseizure medicine should be used in this policy in place of the older term “anti-epileptic drug” where practicable, while recognising that existing prescriptions or healthcare records may use alternative terminology.

Rescue Medicines

Prescribed rescue medicine must only be administered:

• to the person for whom it has been prescribed;
• in accordance with the current prescription and individual emergency management plan;
• for the indication specified in that plan;
• at the prescribed dose, route and timing; and
• by a member of staff who has received appropriate training and has been assessed as competent.

The person-specific emergency management plan must state:

• the medicine to be given;
• the dose and route;
• when it must be administered;
• whether a repeat dose is authorised and, if so, after what interval;
• the maximum permitted dose;
• when 999 must be called; and
• the monitoring required following administration.

Following administration of rescue medicine, staff must document:

• the reason for administration;
• the time the seizure began;
• the time the medicine was given;
• the medicine, dose and route;
• the person administering it;
• the person’s response;
• observations following administration;
• whether emergency medical assistance was requested; and
• any subsequent advice or treatment.

Rescue medicines must be readily accessible to authorised staff when required, while remaining stored securely in accordance with medicines legislation and the organisation’s medicines policy. Stock levels and expiry dates must be checked routinely.

Consent and Capacity in Relation to Medicines

Medicines must only be administered with valid consent unless there is another lawful basis for administration.

Where there is reason to believe that a person lacks capacity to make a particular decision about their medicines, capacity must be assessed in relation to that specific decision and any decision made on their behalf must comply with the Mental Capacity Act 2005.

Any covert administration of medicines must only take place following a lawful, documented Mental Capacity Act process and best-interests decision and must comply with the organisation’s medicines policy. Covert administration must never be undertaken merely for staff convenience.

10. Communication, Consent and Involvement of Families or Representatives

The person with epilepsy must be supported to participate in decisions about their epilepsy care, treatment and medicines to the maximum extent they wish and are able to do so.

Information must be provided in a format and manner that the person can understand, with reasonable adjustments made where necessary.

With the person’s consent, relevant family members, carers or other representatives may be involved in assessment, care planning, reviews and communication about seizure activity and treatment.

A family member or other representative must not be treated as having automatic authority to consent to care or treatment or receive confidential information solely because of their relationship with the person.

Where the person lacks capacity to make a particular decision:

• staff must act in accordance with the Mental Capacity Act 2005;
• the person must still be involved in the decision as far as reasonably practicable;
• staff must identify whether any person holds relevant legal authority, including a valid and applicable health and welfare Lasting Power of Attorney or Court of Protection deputyship;
• appropriate persons must be consulted as required when determining the person’s best interests; and
• decisions and the legal basis for them must be clearly documented.

Where appropriate, {{org_field_name}} will work collaboratively with the person’s GP, neurologist, epilepsy specialist nurse, pharmacist, ambulance service and other relevant healthcare professionals to ensure that epilepsy care remains safe and coordinated.

Relevant information, including the current epilepsy care plan and emergency management plan, must be shared promptly with other healthcare providers where necessary for the person’s safe care and where there is a lawful basis to do so.

11. Documentation, Incident Reporting, Notifications and Learning

a. Seizure Records

Every observed or reported seizure must be documented accurately and as soon as practicable.

The record must include, where known or observed:

• date, time and location;
• circumstances immediately before the seizure;
• suspected trigger, where relevant;
• seizure presentation and signs observed;
• time the seizure started;
• seizure duration;
• level of awareness or responsiveness;
• breathing and colour changes where relevant;
• injuries sustained;
• first aid provided;
• rescue medicine administered, including dose, route and time;
• whether emergency services or another healthcare professional were contacted;
• post-seizure presentation and recovery;
• actions taken following the event; and
• name or identity of the member of staff completing the record.

Records must be accurate, complete, contemporaneous and stored securely.

b. Incident Reporting and Clinical Escalation

A seizure-related incident report must be completed where the seizure results in or involves:

• injury;
• administration of rescue medicine, where required by the organisation’s reporting procedure;
• emergency ambulance attendance;
• attendance at an emergency department or hospital admission;
• a prolonged seizure;
• repeated or cluster seizures;
• significant deterioration or an unexpected change from the person’s usual seizure pattern;
• a medicines error, missed dose or other medicines-related incident;
• failure or delay in following the emergency management plan; or
• any other event meeting the organisation’s incident reporting criteria.

Significant incidents must be reviewed to identify contributing factors, actions required and any lessons that must be shared to reduce the risk of recurrence.

The person’s risk assessment, epilepsy care plan and emergency management plan must be reviewed following a significant epilepsy-related incident where the incident indicates that existing arrangements may no longer adequately meet the person’s needs.

c. CQC and Other Statutory Notifications

The Registered Manager must ensure that epilepsy-related incidents are considered against the statutory notification requirements.

CQC must be notified without delay where an event meets the applicable criteria under the Care Quality Commission (Registration) Regulations 2009, including qualifying deaths, serious injuries, abuse or allegations of abuse, police involvement or other notifiable incidents.

A seizure itself does not automatically require notification to CQC. Notification is required where the circumstances or outcome of the seizure meet a statutory notification criterion.

Where an incident raises a safeguarding concern, the organisation’s safeguarding procedure must also be followed and the appropriate local authority safeguarding team and any other relevant body must be informed where required.

d. Duty of Candour

Where an epilepsy-related incident constitutes a notifiable safety incident within the meaning of Regulation 20 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, {{org_field_name}} must comply with the statutory duty of candour.

This includes:

• acting in an open and transparent manner;
• notifying the person or their relevant representative as soon as reasonably practicable;
• providing a truthful account of the known facts;
• advising what further enquiries or investigations will be undertaken;
• providing a suitable apology; and
• providing the required written follow-up and maintaining records demonstrating compliance with the duty.

The duty of candour procedure must be followed alongside, and not instead of, internal incident reporting, safeguarding processes or CQC notification requirements.

12. Monitoring, Audit and Compliance

The Registered Manager must maintain effective systems for monitoring compliance with this policy and the quality and safety of epilepsy care.

Monitoring arrangements must include, where applicable:

• review of epilepsy risk assessments and care plans to ensure they are current and person-centred;
• checks that individual emergency management plans are available, current and consistent with the person’s prescription;
• review of seizure records for changes in frequency, duration, presentation or recovery;
• review of prolonged, repeated or cluster seizures;
• monitoring of rescue medicine administration;
• medicines administration record audits;
• monitoring of medicines errors, missed doses and unavailable medicines;
• checks of rescue medicine stock, storage and expiry dates;
• monitoring of staff epilepsy training and rescue medicine competency;
• review of seizure-related injuries, ambulance call-outs, hospital attendances and admissions;
• review of incident investigations and lessons learned; and
• checks that required safeguarding referrals, CQC notifications and duty of candour actions have been completed.

Where an audit, incident, complaint or review identifies a shortfall, the Registered Manager must:

• assess the immediate risk to people using the service;
• take proportionate action to protect people from avoidable harm;
• identify the cause of the shortfall;
• establish a documented action plan with named responsibilities and timescales;
• review affected risk assessments, care plans or procedures;
• provide additional training, supervision or competency assessment where required; and
• verify that the actions taken have been effective.

Evidence of audits, findings, actions and follow-up must be retained in accordance with the organisation’s governance and record-management arrangements.

13. Responsibilities

Registered Manager

The Registered Manager is responsible for:

• ensuring this policy is implemented;
• ensuring that people with epilepsy have appropriate risk assessments, care plans and emergency management plans;
• ensuring sufficient numbers of appropriately trained and competent staff are available to meet people’s epilepsy-related needs safely;
• ensuring medicines, including rescue medicines, are managed safely;
• monitoring epilepsy-related incidents and identifying trends or required improvements;
• ensuring significant incidents are investigated and learning is implemented;
• ensuring statutory safeguarding referrals, CQC notifications and duty of candour requirements are completed where applicable; and
• maintaining oversight of compliance through audit and quality assurance.

Nursing and Care Staff

Staff are responsible for:

• knowing and following each person’s epilepsy care plan and emergency management plan;
• providing seizure first aid safely;
• administering medicines only where authorised, trained and competent;
• accurately timing, observing, recording and reporting seizures;
• recognising and escalating changes in seizure patterns or deterioration;
• seeking emergency assistance when required;
• reporting incidents, medicines errors and safeguarding concerns without delay; and
• working only within the limits of their role, training and competence.

Staff Responsible for Medicines

Staff responsible for medicines must:

• ensure antiseizure and rescue medicines are available when required;
• maintain accurate medicines records;
• ensure appropriate storage;
• monitor stock and expiry dates;
• report medicines discrepancies and errors; and
• seek appropriate clinical advice where medicine supply, administration or adherence may place the person at risk.

Health and Safety or Relevant Service Lead

The person responsible for health and safety arrangements must support the assessment and management of environmental risks associated with epilepsy and ensure any relevant equipment is suitable, maintained and used safely.

People Using the Service

People with epilepsy will be supported and enabled, as far as they wish and are able, to:

• participate in decisions about their care;
• share information about their seizures, preferences and known triggers;
• manage aspects of their own care or medicines where appropriate; and
• raise concerns or request changes to their care.

Families, Carers and Representatives

Families, carers and representatives may contribute information and participate in care planning where the person consents or where there is another lawful basis for their involvement.

They do not carry responsibility for the provider’s compliance with this policy or statutory duties.

14. Consequences of Non-Compliance

Failure to comply with this policy may result in:

• Disciplinary action for staff failing to follow epilepsy management protocols.
• Regulatory enforcement from CQC for inadequate epilepsy care provision.
• Risk to individuals due to improper seizure response, leading to harm or hospitalisation.

15. Policy Review

This policy will be formally reviewed at least annually and sooner where required.

An earlier review must take place where there is:

• a relevant change in legislation or CQC regulatory requirements;
• new or materially revised NICE guidance relevant to epilepsy management;
• a relevant national patient or medicines safety alert;
• learning arising from a serious epilepsy-related incident;
• evidence from audit, complaints or safeguarding activity that the policy is no longer effective; or
• a significant change in the services provided by {{org_field_name}}.

Following revision, relevant changes must be communicated to staff and additional training or competency assessment must be provided where required.

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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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