EI13 MANAGING SEIZURES POLICY

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1 EI13 MANAGING SEIZURES POLICY 1. Policy Statement 1.1 Epilepsy Ireland recognises that seizures will occur during the course of our daily work with service users due to the nature of the work of the organisation. We believe that any person having a seizure has a right for the seizure to be managed with dignity and the procedure outlined in this document identifies how Epilepsy Ireland will manage seizures, seizure medication, and safety issues relating to seizures. 2. Purpose 2.1 To ensure that all reasonable safety procedures are in place to reduce the accident risks and impact of a seizure occurring within our working environment 2.2 To ensure that seizures which occur within our working environment, are managed in a way that is respectful and dignified and according to the preferences of the person. 2.3 To ensure that all workers are confident in responding to seizures and respond using best practice outlined in this policy & procedure and the First Aid for Seizure Management directions (Appendix One). 2.4 To provide direction around the administration of Buccal Midazolam in identified limited circumstances and clarity around non-administration in other circumstances. 3. Definitions 3.1 A seizure is defined as a brief and temporary malfunction of normal brain activity. 3.2 Epilepsy is a tendency to recurring seizures which originate in the brain. 3.3 A PWE refers to a person with epilepsy and is used for ease of reading 4. Legislation 4.1 This policy has not been written in relation to any specific legislation, but contributes to all standards and expectations relating to managing safety of service users within the working environment, including the HSE Section 39 expectations relating to standards of care. 5. Scope 5.1 This policy applies to the management of seizures that occur to a service user during engagement with Epilepsy Ireland s Services. All workers who provide direct services to persons with Epilepsy are expected to operate from this policy and procedure. 5.2 When Epilepsy Ireland workers are on their own time, and are required to manage a seizure, this policy is not applicable as it relates to actions on working time only. Practices outlined in this policy relating to people experiencing seizures do not extend to members of the public who are not engaged with a programme or activity in Epilepsy Ireland 5.3 People working in the role of Nurse with Epilepsy Ireland are within their scope of practice to deviate from this policy in so far as their professional practice indicates.

2 6. Responsibilities 6.1 The CEO has responsibility to ensure the organisation delivers safe and responsible services to service users and that safety is prioritized and seizures managed appropriately by the organisation. 6.2 The Director of Services has responsibility of ensuring workers are familiar with the policy and procedures and understand their responsibilities therein. 6.4 All workers have the responsibility of reading and understanding this policy and putting into practice the procedures outlined herein. 7. Further Resources Epilepsy Ireland Poster First Aid for Tonic Clonic Seizures Epilepsy Ireland Poster First Aid for Complex Partial Seizures Epilepsy Ireland Leaflet First Aid for Seizures ( Seizure first aid video - MANAGING SEIZURES PROCEDURE 8. Buccal Midazolam Rescue Medication 8.1 Workers in Epilepsy Ireland are not required to administer Buccal Midazolam Rescue Medication during the course of their work to service users who may be having a tonic clonic seizure. To do so, without an agreed protocol in place, is not advised practice. 8.2 Epilepsy Ireland will ensure that people with epilepsy who use rescue medication and parents of children who use rescue medication are informed of and aware of the fact that we don t administer rescue medication in normal circumstances. This will be included in a Managing Seizures Statement which is available on the website. 8.3 In limited circumstances, where a service user is known to us, an agreement may be reached between the person with epilepsy (or parent of the child with epilepsy) and Epilepsy Ireland whereby the protocol for administration is shared with Epilepsy Ireland and consent for administration is signed in advance by the PWE/Parent. These circumstances will be discussed and agreed on an individual basis between the DOS, CRO and the individual. This protocol and consent will be written up on an individual basis. 8.4 Where there has been an agreement for Emergency Rescue Medication to be kept by Epilepsy Ireland during an event or activity, the medication must be labelled with the service users name, be kept in a locked box (portable if required). A Seizure Management form must be completed (see point 9 below) and in the case of children

3 under 18, the parent s consent form contained in the Child Protection Policy must be completed. 9. Seizure Management Forms 9.1 In circumstances where we are engaging with service users on courses or programmes that are not once-off events (e.g. STEPS Programme and Ongoing Support Groups - and in certain circumstances of one-to-one ongoing support work) seizure management forms must be completed by the PWE/Parent and provided to the relevant worker in advance of the course commencement. The seizure management forms will outline the details of type of epilepsy, type of seizure, indications of seizure, requests for how to manage the seizure, details of next of kin, and an understanding by the service user that we will call an ambulance in the case of a tonic clonic seizure lasting longer than 5 minutes. 9.2 Seizure management forms should be kept in locked cabinets in local offices and should be destroyed (shredded) within one year of the completion of the programme. Alternatively, a form may be updated within the year and kept on file. Where an incident or issue has arisen, the seizure management form should be kept for possible further use. 9.3 If a person indicates on the seizure management form that they would like their seizure to be filmed on a mobile phone for their medical team, the worker can film or ask another person to film the seizure. This can only be done on the mobile phone belonging to the person who his requested their seizure to be filmed, no other mobile phone can be used for this purpose. This should not be done unless indicated on the seizure management form and a passcode for the phone is given, and only where it is useful as evidence for the medical team. 10. Consent forms for children and teenagers under 18 years old 10.1 Standardised parental consent forms are supplied in the appendix of the child protection policy relating to Emergency Rescue Medication and Seizure management practices of the organisation, the parents liability relating to a child and consent for risk activities. This standardised parental consent form is considered to be part of the practices of seizure management in the organisation as well as part of child protection practices and should be completed for each child participating in an event or activity organised by Epilepsy Ireland. 11. Procedures for managing seizures 11.1 Where a worker is managing a tonic clonic seizure, the first aid for managing seizures procedures identified in the managing tonic clonic seizures in the appendices should be followed Where a worker is managing a complex partial seizure, the first aid for managing seizures procedures identified in the managing complex partial seizures in the appendices should be followed Where a service user has had a seizure within our working environment, the following additional practices are expected to be followed by the worker:

4 Ensuring that the person has support e.g. a taxi home if required; somebody to collect them; a person at home to support them. Ensuring that contact is made with the service user the following day or as soon as possible to follow up on their well-being and to make sure they have been looked after When appropriate at the discretion of the worker, a review of the seizure with them to see if further medical consideration is required e.g. is the medication not working; do they need a consultants review; do they need to talk to our Epilepsy Nurse; etc. Where an ambulance is called for a service user due to a seizure lasting longer than five minutes, it is appropriate for the worker to attend in the ambulance if circumstances allow for this. However, this will often not be possible. 12. Incidents, Accidents and Near Misses 12.1 Where a seizure has occurred, all steps of First Aid for Seizures have been followed, and the person has recovered, no written record of the seizure is required. However, in a circumstance where the seizure has caused a significant impact or have required unusual additional supports an Incident, Accident and Near Miss form must be completed and submitted as per the policy. This form is contained within the Incident, Accident and Near Miss Policy Examples of possible circumstances that this may arise include the following: Worker accompanies a person back to their (service users) home Worker stays in A&E with person or attends in ambulance Taxi or other expense has been paid by EI for the person Worker has concern that procedures and best practice relating to managing the seizure may not have been followed Some issue arose relating to Emergency Rescue Medication (e.g. Ambulance did not have it etc.) Any other unusual circumstance relating to risk issues for the service user, staff member or the organisation 13. Safety and Events 13.1 When booking venues and activities, due care should be given by the worker to the likelihood of seizures occurring, and any obvious risks or safety issues present both at the venue and inherent in the activity being undertaken. These risks should be mitigated for where possible. The Event Health & Safety Checklist in the Child Protection Policy must be completed for all events and should review safety issues relating to seizure management Fixed seating preferably should not be used for events, and if it is used, an announcement should be made that people who may get seizures would be safer seated near the aisles A quiet room, (seizure room), with soft furnishings or mattress should be identified for events so that people can recover from seizures. Where this is not possible, a safe

5 area of the location should be found and identified to attendees by announcement at the beginning of the event Where large numbers of people are gathered, the worker running the event has the responsibility to ensure that they have enough Epilepsy Ireland workers or volunteers to support them in the case of seizures. This can be discussed with Director of Services for further clarification, and is also referred to in the Child Protection Policy, event management section Where an activity which is being run by Epilepsy Ireland is deemed to hold a particular safety risk relating to seizure triggers, this must be outlined to the attendees / parents of the attendees in advance so that they can make an informed decision relating to risk and safety. This includes child, teen and adults events that relate to outdoor adventure activities or other potentially higher risk activities. It is the culture of Epilepsy Ireland to encourage people with epilepsy to participate in activities and this should continue, but appropriate information should be provided to the person to make an informed choice Consideration at all events should be given relating to managing photosensitive epilepsy and flash photography. No flash photography should be used without checking with service users if anyone has photosensitive epilepsy. 14. Appendices Appendix One First Aid for Seizure Management Poster Tonic Clonic Seizures Appendix Two First Aid for Seizure Management Poster Complex Partial Seizures Appendix Three Epilepsy Ireland leaflet Managing Seizures Appendix Four Seizure Management Form

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9 Epilepsy Ireland Managing Seizures Policy 2016 Page 9

10 MANAGING SEIZURES FORM Name of Participant: Seizure Type (s): Frequency of seizure(s): Signs before seizure happens (if any): Describe the seizure happening: After the seizure what happens for you? How do you want the group to manage a seizure if you have one? How long will your seizure run? How long is your recovery time? What constitutes an emergency for you? Do you want us to phone somebody if you have a seizure? YES / NO If yes, please provide name and phone number here: In an emergency please write here your next of kin NAME, RELATIONSHIP and CONTACT PHONE NUMBER (if different from previous question) If you want us to film your seizure on your mobile phone please write yes here and provide your phone password directly to us on the day of the event Epilepsy Ireland will call an ambulance if a seizure lasts for longer than five minutes or if any serious injury is incurred during the seizure Epilepsy Ireland Managing Seizures Policy 2016 Page 10