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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, effective and person-centred approach to supporting individuals with epilepsy and responding to seizures.

This policy sets out the arrangements for recognising seizures, reducing and managing epilepsy-related risks, administering prescribed antiseizure and rescue medicines, responding to seizure-related emergencies, monitoring and recording seizure activity, obtaining appropriate medical assistance, and ensuring that individuals receive care and support in accordance with their assessed needs, personal outcomes, personal plan and any individualised epilepsy or emergency seizure management plan.

{{org_field_name}} will ensure that individuals with epilepsy are supported in a manner that protects and promotes their safety, dignity, rights, independence, choice and well-being. Individuals will be involved, as far as practicable and in accordance with their wishes and capacity, in decisions about their epilepsy care and seizure management.

This policy must be read and implemented in accordance with:

• the Regulation and Inspection of Social Care (Wales) Act 2016;
• the Regulated Services (Service Providers and Responsible Individuals) (Wales) Regulations 2017, as amended;
• the associated Welsh Government statutory guidance for service providers and responsible individuals;
• relevant Care Inspectorate Wales requirements;
• the Social Services and Well-being (Wales) Act 2014, where applicable;
• the Mental Capacity Act 2005 and associated Code of Practice, where applicable;
• current NICE guidance relating to the diagnosis and management of epilepsies; and
• the organisation’s Medication Management and Administration Policy and other relevant organisational policies and procedures.

The service will ensure that epilepsy-related care is based upon the individual’s assessed needs and current clinical instructions and that staff do not substitute general seizure-management guidance for an individualised healthcare or emergency management plan where such a plan has been provided by an appropriate healthcare professional.

2. Scope

This policy applies to all staff members at {{org_field_name}}, including care workers, nurses, support staff, and external healthcare professionals involved in the care and support of residents with epilepsy. It covers procedures for assessing, monitoring, treating, and preventing epilepsy-related complications while ensuring that residents’ rights, dignity, and well-being are prioritised. This policy also applies to families, advocates, and external medical professionals who may contribute to the management of a resident’s epilepsy care.

3. Principles of Epilepsy Management

Person-Centred Care and Individualised Plans

• Each individual with epilepsy will have their epilepsy-related needs assessed and incorporated into their personal plan.
• Where required because of the individual’s epilepsy, seizure history or prescribed treatment, an individualised epilepsy or seizure management plan will be developed using information from the individual, relevant assessments, healthcare professionals and any existing clinical or emergency management plan.
• The individual must be involved in the development and review of their epilepsy-related care arrangements. The placing authority, where applicable, and any representative must be involved in accordance with the requirements governing preparation and review of the individual’s personal plan.
• A representative will not be involved where the individual is an adult, or a child aged 16 or over, who does not wish the representative to be involved, or where involving the representative would not be consistent with the individual’s well-being.
• The individual will be provided with information and support in an appropriate language, style, format and method of communication to enable them, as far as practicable, to understand their condition and participate in decisions concerning their care and treatment.
• The individual’s epilepsy or seizure management arrangements must contain sufficient information to enable staff to recognise the individual’s usual seizure presentation and provide safe and consistent support.
• Where relevant, the plan must include:
  • the individual’s diagnosed seizure type or types;
  • how each seizure type usually presents;
  • usual seizure frequency and duration;
  • known or suspected triggers;
  • warning signs, aura or changes that may occur before a seizure;
  • the individual’s usual presentation during a seizure;
  • the individual’s usual recovery pattern and post-seizure needs;
  • identified epilepsy-related risks;
  • seizure first-aid requirements;
  • actions staff must take during and following a seizure;
  • prescribed regular antiseizure medicines;
  • prescribed rescue medication;
  • the circumstances in which rescue medication must be administered;
  • the prescribed dose and route of rescue medication;
  • any required interval before a further prescribed dose may be administered;
  • the maximum prescribed number of doses;
  • circumstances in which emergency medical assistance must be requested;
  • required observations and monitoring following a seizure or administration of rescue medication;
  • arrangements for obtaining healthcare advice following changes in seizure pattern; and
  • any individual preferences relevant to the management of epilepsy.
• Where an individual has an emergency seizure management plan prepared or agreed by an appropriate healthcare professional, staff must follow that plan.
• The individual’s current epilepsy or emergency seizure management information must be readily accessible to staff responsible for providing their care while being stored and shared in accordance with confidentiality and data protection requirements.
• Epilepsy-related care arrangements must form part of, or be clearly linked to, the individual’s personal plan and relevant risk assessments.
• The personal plan must be reviewed as and when required and at least every three months. It must be reviewed sooner where there is a significant change in the individual’s seizure activity, health, medicines, assessed needs or associated risks.

Recognising and Responding to Seizures

• Staff supporting individuals with epilepsy must have sufficient knowledge to recognise the seizure types and presentations relevant to the individuals for whom they provide care.
• Staff must recognise that seizures can present in different ways and must not assume that all seizures involve loss of consciousness or convulsive movements.
• Staff must be familiar with the individual’s usual seizure presentation as described in their personal plan and epilepsy or seizure management plan.
• During a seizure, staff must remain calm, provide reassurance where appropriate, protect the individual from avoidable injury and follow the individual’s seizure management plan.
• Staff must note and time the seizure from the point at which seizure activity is first observed, where practicable.
• Staff must remove or reduce immediate environmental hazards where this can be achieved safely.
• Where appropriate, staff should protect the individual’s head from injury without unnecessarily restricting their movement.
• Staff must not place anything into the individual’s mouth during a convulsive seizure.
• Staff must not give food, drink or oral medication during a convulsive seizure or before the individual has recovered sufficiently to swallow safely.
• Staff must not unnecessarily restrain the individual during a seizure. Any intervention involving restraint must comply with the organisation’s policy concerning control, restraint and restrictive practice and applicable legal requirements.
• Staff must monitor the individual’s breathing and general condition and, when clinically appropriate following the convulsive phase, support the individual into a safe position which assists breathing, unless their individual emergency plan or another clinical consideration requires a different approach.
• Staff must remain with and observe the individual as required until they have recovered sufficiently or responsibility has been transferred to an appropriate healthcare professional.
• Every seizure must be recorded in accordance with the individual’s care plan and the recording requirements set out within this policy.

Medication Management for Epilepsy

• All medicines used to manage epilepsy must be managed in accordance with the Medication Management and Administration Policy (CHW21), the individual’s current prescription and the individual’s personal plan.
• Staff authorised to administer medicines will administer prescribed antiseizure medicines and rescue medicines in accordance with the individual’s prescription, medication administration record, personal plan and, where applicable, individualised emergency seizure management plan.
• Staff must not alter, omit, stop, withhold or change the dose or timing of a prescribed antiseizure medicine unless this is authorised by an appropriately qualified prescriber or is specifically provided for within the individual’s current prescription or authorised medicines instructions.
• Medicine adherence must be monitored. Refused, omitted, delayed or missed doses must be recorded and managed in accordance with the Medication Management and Administration Policy and appropriate clinical advice must be sought where required.
• Suspected adverse effects or clinically significant changes following administration of antiseizure medication must be recorded and escalated to an appropriate healthcare professional.
• Rescue medication, including buccal midazolam or rectal diazepam where prescribed, must only be administered in accordance with the individual’s current prescription and individualised emergency management plan.
• No member of staff may administer prescribed rescue medication unless they have received appropriate training relevant to the medication and route of administration and have been assessed as competent to undertake the task.
• Staff competency to administer rescue medication must be maintained, monitored and reviewed in accordance with the service’s medicines-management and staff-development arrangements.
• The individual’s rescue medication instructions must specify, where applicable:
  • the medicine;
  • prescribed dose;
  • route of administration;
  • circumstances in which it must be administered;
  • seizure duration or other clinical threshold for administration;
  • minimum interval between prescribed doses;
  • maximum number of prescribed doses;
  • observations required following administration;
  • what action must be taken if the medicine is ineffective; and
  • when emergency medical assistance must be requested.
• Every administration of rescue medication must be recorded promptly on the appropriate medication record and within the individual’s care records.
• Rescue medicines must be stored safely while remaining accessible to authorised staff when required in an emergency.
• Arrangements must be in place to ensure that an adequate supply of prescribed rescue medication is maintained and that medicine expiry dates are monitored.
• Prescribed medicines must be subject to the organisation’s medicines-management audit arrangements.
• Medication reviews will be facilitated with the individual’s GP, neurologist, epilepsy specialist nurse, pharmacist or other appropriate healthcare professional where required.

Seizure Triggers and Lifestyle Considerations

• Staff will work with the individual and relevant healthcare professionals to identify known or suspected factors associated with changes in seizure activity.
• Any known individual triggers must be documented within the individual’s personal plan where relevant.
• Staff will support individuals, in accordance with their wishes and assessed needs, with matters such as maintaining appropriate sleep, hydration, nutrition, prescribed medication routines and other health or lifestyle arrangements relevant to their epilepsy.
• Staff must not assume that common epilepsy triggers apply to every individual. Risk-management arrangements must be based upon the individual’s history, assessments and professional advice.
• Individual risk assessments must consider activities and circumstances relevant to the person, which may include:
  • bathing and showering;
  • mobility and falls;
  • use of stairs;
  • cooking;
  • use of electrical or other potentially hazardous equipment;
  • eating and drinking;
  • community activities;
  • exercise;
  • transport;
  • sleep and night-time support;
  • access to water;
  • activities undertaken independently; and
  • any other circumstances in which a seizure could present an increased risk of harm.
• Risk-management measures must be proportionate and should support the individual’s independence, choice and positive risk-taking wherever this can be achieved safely.

Emergency Seizure Response

• Staff must follow the individual’s current emergency seizure management plan wherever one is in place.
• A convulsive seizure lasting five minutes or more must be treated as a medical emergency requiring immediate action in accordance with the individual’s emergency management plan and current clinical guidance.
• Repeated or cluster seizures, or seizures occurring without the individual recovering as expected between episodes, must be managed in accordance with the individual’s emergency management plan and escalated appropriately.
• Where prescribed rescue medication is required by the individual’s plan, it must be administered by a trained and competent member of staff in accordance with the prescription and authorised instructions.
• Staff must call 999 where this is required by the individual’s emergency management plan.
• Staff must also obtain emergency medical assistance where there is an immediate threat to life or where the situation cannot be safely managed by the service, including where:
  • the individual has significant or persistent difficulty breathing;
  • the seizure continues beyond the emergency threshold specified in the individual’s plan;
  • prescribed rescue treatment has failed to control the seizure within the timescale specified in the individual’s plan;
  • the individual has sustained a serious injury;
  • there is concern that the individual’s airway is compromised;
  • the seizure occurs in circumstances requiring emergency medical assessment;
  • the individual does not recover in the manner expected for them and this presents a clinical concern; or
  • staff have any other reason to believe that urgent medical treatment is required.
• Staff must provide emergency first aid within the limits of their training and competence while awaiting emergency medical assistance.
• Staff must provide the ambulance service or other healthcare professional with relevant information, including the known duration and presentation of the seizure, medicines administered, time and dose of any rescue medicine, the individual’s emergency management plan and relevant known health information.
• Following an emergency seizure, staff must continue appropriate observation, provide reassurance, check for injuries and meet the individual’s post-seizure needs in accordance with their personal plan.
• Relevant healthcare professionals must be informed where required by the individual’s plan or where there has been a significant or unexplained change in seizure activity.

Recording and Reporting of Seizures

• Each observed seizure must be recorded promptly in the individual’s care records.
• The record must contain sufficient information to support safe ongoing care, clinical review and identification of changes or patterns.
• Depending upon the nature of the seizure and information available, records should include:
  • date and time of the seizure;
  • location and relevant circumstances;
  • what the individual was doing immediately before the seizure;
  • any known or suspected trigger;
  • any warning sign or aura observed or reported;
  • how the seizure presented;
  • seizure duration;
  • changes in awareness or consciousness;
  • relevant breathing or colour changes;
  • any injury sustained;
  • first aid or other interventions provided;
  • rescue medication administered, including medicine, dose, route and time;
  • the individual’s response to rescue medication;
  • whether emergency services were contacted;
  • whether another healthcare professional was contacted;
  • the individual’s post-seizure presentation;
  • recovery time; and
  • further action, monitoring or review required.
• Any significant change in seizure frequency, duration, presentation or recovery must be reported promptly to the senior member of staff responsible for the individual’s care and escalated to an appropriate healthcare professional where clinically indicated.
• Prolonged seizures, cluster seizures, seizure-related injuries, unplanned use of emergency services, unexpected or atypical responses to rescue medication, and epilepsy-related medication errors must be reported through the organisation’s incident-reporting arrangements where applicable.
• Following a significant incident, the individual’s personal plan, epilepsy or seizure management plan and relevant risk assessments must be reviewed where the event indicates that existing arrangements may no longer adequately meet the individual’s needs.

Staff Training and Competency Development

• Staff must receive epilepsy awareness training appropriate to their role and to the needs of the individuals they support.
• Training must provide staff with appropriate knowledge of:
  • epilepsy and relevant seizure types;
  • how seizures may present;
  • individualised seizure recognition;
  • seizure first aid;
  • maintaining safety during a seizure;
  • actions which must not be undertaken during a seizure;
  • emergency escalation arrangements;
  • post-seizure care;
  • recording and reporting requirements; and
  • the importance of following individual personal and emergency management plans.
• Where an individual may require prescribed emergency seizure medication, the service provider must ensure that sufficient members of staff who may be required to administer that medication are appropriately trained and assessed as competent.
• Staff must not administer rescue medication unless they are authorised to do so and have been appropriately trained and assessed as competent in the relevant procedure.
• Staffing arrangements must ensure that an appropriately trained and competent member of staff is available whenever this is required to meet an individual’s assessed needs, including during nights, weekends and other periods covered by the individual’s care arrangements.
• Training and competency records must be maintained.
• Staff competency must be reviewed in accordance with the organisation’s training and medicines-management arrangements and whenever concerns regarding competence are identified.
• Refresher or additional training must be provided where required to ensure that staff continue to have the knowledge, skills and competence necessary to meet the epilepsy-related needs of individuals using the service.
• Where there is a significant change in an individual’s epilepsy management, such as a new seizure presentation, new rescue medication or changed administration instructions, relevant staff must receive the necessary information, instruction, training or competency assessment before undertaking any new task for which this is required.
• Agency and temporary staff must receive sufficient information about the needs of individuals they are supporting, including relevant epilepsy-management and emergency instructions.
• Agency or temporary staff must not undertake the administration of rescue medication or another delegated healthcare activity unless the service is satisfied that they have the necessary training, authority and competence to undertake that activity safely.
• The Registered Manager must maintain oversight of staff training and competence and take action where gaps are identified.

Communication with Individuals, Representatives and Healthcare Professionals

• Individuals must be supported to participate in decisions about their epilepsy care and treatment and must be provided with information appropriate to their language and communication needs.
• Representatives will be involved where appropriate and lawful and in accordance with the individual’s wishes, rights, capacity and personal-plan requirements.
• Staff must communicate relevant changes in seizure activity, treatment response or health status to an appropriate healthcare professional where clinical advice or review is required.
• The service will work collaboratively with relevant healthcare professionals, which may include:
  • the individual’s GP;
  • neurologist;
  • epilepsy specialist nurse;
  • pharmacist;
  • emergency services;
  • community nursing services; and
  • other professionals involved in the individual’s care.
• Records of relevant professional advice, consultations and resulting actions must be maintained within the individual’s records.
• Where epilepsy-related advice or instructions provided by healthcare professionals change, the individual’s personal plan, emergency management arrangements and relevant risk assessments must be reviewed and updated as necessary.

4. Individual Risk Assessment, Personal Plan, Mental Capacity and Statutory Reporting

Individual Risk Assessment

Each individual with epilepsy must have epilepsy-related risks assessed as part of the provider’s assessment, personal planning and ongoing risk-management arrangements.

The assessment must be proportionate to the individual’s circumstances and must consider relevant factors including:

• seizure type and presentation;
• usual seizure frequency and duration;
• known history of prolonged seizures or cluster seizures;
• usual recovery pattern;
• known or suspected triggers;
• risk of falls or physical injury;
• mobility;
• bathing and showering;
• eating and drinking;
• sleep and night-time needs;
• medicines;
• rescue medication;
• level of supervision or support required;
• community access;
• activities undertaken independently;
• communication needs;
• cognitive impairment where relevant; and
• any other circumstance which may increase the risk of harm during or following a seizure.

The outcome of the assessment must be reflected in the individual’s personal plan and, where applicable, their epilepsy or emergency seizure management plan.

Risk-management arrangements must be individualised and proportionate. Restrictions must not be imposed solely because an individual has epilepsy. The service must support independence, choice and positive risk-taking wherever this is appropriate and can be achieved safely.

Where the individual’s epilepsy-related needs are complex or specialist, advice must be obtained from an appropriately qualified healthcare professional where necessary to ensure the service is able to meet those needs safely.

Review of the Personal Plan and Epilepsy Arrangements

The individual’s personal plan must be kept under review and must be formally reviewed as and when required and at least every three months.

The epilepsy-related elements of the personal plan, risk assessments and any associated seizure or emergency management plan must also be reviewed whenever relevant circumstances change, including:

• a significant change in seizure frequency;
• a change in seizure type or presentation;
• a significant change in seizure duration;
• prolonged or cluster seizure activity;
• a significant change in recovery following seizures;
• a seizure-related injury;
• a hospital attendance or admission associated with epilepsy;
• a change to prescribed antiseizure medication;
• the introduction, discontinuation or change of rescue medication;
• a change to emergency treatment instructions;
• a significant change in the individual’s general health or assessed needs;
• concerns regarding the effectiveness of existing risk-management arrangements; or
• advice from a relevant healthcare professional requiring the care arrangements to change.

Following review, the personal plan and associated assessments must be revised where necessary and relevant changes must be communicated to staff responsible for providing the individual’s care.

Mental Capacity, Consent and Best Interests

Staff must work in accordance with the Mental Capacity Act 2005 when supporting adults whose ability to make a relevant decision may be impaired.

An adult must be presumed to have capacity to make a decision unless it is established that they lack capacity in relation to that particular decision.

A person must not be treated as unable to make a decision merely because they make a decision which others consider unwise.

Where there is reason to doubt an adult’s capacity to make a specific decision concerning their epilepsy care, medicines, treatment or risk management, an appropriate decision-specific assessment of capacity must be undertaken in accordance with the Mental Capacity Act 2005.

Where an individual lacks capacity to make the relevant decision:

• any decision or act undertaken on their behalf must be in their best interests;
• the least restrictive available option must be considered;
• the individual must be involved as far as practicable;
• relevant lawful representatives must be consulted where required; and
• any applicable legal authority relating to the decision must be identified and respected.

Any valid and applicable advance decision to refuse treatment must be respected in accordance with the Mental Capacity Act 2005.

Where applicable, staff must take account of a valid health and welfare Lasting Power of Attorney, court-appointed deputy or relevant decision or order of the Court of Protection.

A restriction which amounts to a deprivation of liberty must not be imposed without lawful authority.

CIW and Other Statutory Notifications

All seizures and seizure-related incidents requiring recording under this policy must be recorded internally. However, a seizure is not automatically a notifiable event to Care Inspectorate Wales solely because a seizure has occurred.

Following a serious seizure-related incident, the Registered Manager or other person with delegated responsibility must consider whether the circumstances meet the statutory notification requirements of the Regulated Services (Service Providers and Responsible Individuals) (Wales) Regulations 2017.

Where an event meets the criteria specified within Schedule 3 of the Regulations, the service provider must notify the relevant authority in accordance with Regulation 60.

CIW must be notified where a seizure-related event constitutes a notifiable event, including where applicable:

• a serious accident or injury to an individual;
• an incident which has been reported to the police;
• an event which prevents, or could prevent, the provider from continuing to provide the service safely;
• abuse or an allegation of abuse involving the service provider, a member of staff or a volunteer;
• an allegation of misconduct by a member of staff; or
• the death of an individual where accommodation is provided.

For the purposes of notification of a serious accident or injury, the service must apply the criteria set out in the Regulations and current statutory guidance, including whether, in the reasonable opinion of a healthcare professional, the accident or injury requires treatment by a healthcare professional and has or may have resulted in the serious consequences specified by the Regulations.

Notifications required under Regulation 60 must include details of the event and, unless otherwise stated within the Regulations, must be made without delay, in writing, and in the manner and form required by the service regulator.

The service must also make any other notifications or referrals required by law, safeguarding procedures, commissioners or other relevant authorities.

5. Related Policies

This policy must be read alongside relevant organisational policies and procedures, including:

• CHW07 – Person-Centred Care Policy
• CHW11 – Safe Care and Treatment Policy
• CHW13 – Safeguarding Adults from Abuse and Improper Treatment Policy
• CHW17 – Infection Prevention and Control Policy
• CHW18 – Risk Management and Assessment Policy
• CHW21 – Medication Management and Administration Policy
• Mental Capacity and Best Interests Policy
• Incident and Accident Reporting Policy
• CIW Notifications/Notifiable Events Policy
• Staff Training, Supervision and Competency Policy
• Record Keeping Policy
• Control, Restraint and Restrictive Practice Policy, where applicable

6. Monitoring and Review

The Registered Manager will maintain oversight of the implementation of this policy and ensure that epilepsy-related care is provided in accordance with individuals’ assessed needs, personal plans, risk assessments, prescribed treatment and current emergency management instructions.

This policy will be reviewed at least annually and sooner where there is:

• a change in relevant legislation or regulations;
• a change in Welsh Government statutory guidance;
• a change in Care Inspectorate Wales requirements;
• a change in relevant national clinical guidance;
• a significant change in evidence-based practice;
• learning arising from an incident, accident or medicine error;
• a safeguarding concern;
• a complaint relating to epilepsy care;
• an identified deficiency arising from audit or quality monitoring; or
• another matter indicating that the policy may no longer support safe and compliant practice.

Monitoring arrangements will include, where applicable:

• review of seizure records and seizure-related incidents;
• monitoring for changes or trends in seizure frequency, duration, presentation or recovery;
• review of seizure-related injuries;
• review of occasions on which rescue medication has been administered;
• review of emergency-service involvement;
• review of epilepsy-related medication errors, omissions or near misses;
• monitoring of staff epilepsy training;
• monitoring and review of staff competency to administer rescue medication;
• review of relevant individual risk assessments;
• confirmation that personal plans are reviewed at least every three months and sooner where required;
• review of significant changes communicated by healthcare professionals; and
• review of actions taken following identified concerns or incidents.

Where rescue medication is prescribed, medicines-management audits must include checks, as applicable, that:

• the prescribed rescue medication is available;
• an adequate supply is maintained;
• the medicine is within its expiry date;
• the medicine is stored appropriately;
• staff can access it promptly when required;
• current prescribing and administration instructions are available;
• the individual has a current emergency seizure management plan where required;
• relevant staff are trained and competent to administer the medicine;
• administration records are complete and accurate; and
• any administration of rescue medication has been appropriately recorded and followed up.

Where monitoring identifies a change or recurring pattern in an individual’s epilepsy, concerns regarding the effectiveness of treatment, increased use of rescue medication, repeated emergency-service involvement or other concerns regarding the safety or effectiveness of the individual’s care arrangements, the Registered Manager must ensure that appropriate action is taken.

This may include:

• seeking advice from an appropriate healthcare professional;
• reviewing and revising the individual’s personal plan;
• reviewing the epilepsy or emergency seizure management plan;
• updating risk assessments;
• reviewing staffing arrangements;
• providing additional staff training or competency assessment;
• reviewing medicines-management arrangements; and
• making any required internal or statutory notifications.

Records of audits, reviews, identified actions and actions completed must be retained in accordance with the organisation’s record-keeping arrangements.

Feedback from individuals, representatives where appropriate, staff and relevant healthcare professionals will be considered as part of monitoring and improvement of epilepsy care.

The Responsible Individual will maintain appropriate oversight of the quality and safety of the service in accordance with their regulatory responsibilities.

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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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