Guidance for the use of buccal midazolam or rectal diazepam in the treatment of epileptic seizures Version: V2 Author Lilian Baxendale Designation: Pharmacist Responsible Director: Dr Sharon Binyon Target Audience: Staff working on behalf of CWPT who are administering buccal midazolam or rectal diazepam in the treatment of epileptic seizures Approved By: Drugs and Therapeutics Committee Approval Date: 17th March 2016 Next Review Date: March 2019 ______________________________________________________ If printed, copied or otherwise transferred from the Intranet, Trust-wide Corporate Business Records will be considered ‘uncontrolled copies’. Staff must always consult the most up to PDF version which is on the Intranet. Page 1 of 35 CONTENTS 1. Introduction 2. Definitions 3. Duties / Responsibilities 4. Process 5. Consultation 6. Training and Support 7. References 8. Trust Associated Documents 9. Appendices Appendix 1 – Guidance for the care of a person experiencing a seizure Appendix 2 – Example Epilepsy Management Plan Appendix 3 - Good Practice Guidelines: For Paid Carers who Administer Buccal Midazolam Page 2 of 35 1. Introduction This document details the procedures to be followed when rectal diazepam or buccal midazolam are administered in the treatment of epileptic seizures. It also contains guidance on the management of epileptic seizures. It is not intended for use in the emergency treatment of seizures of a person who does not have epilepsy e.g. seizures due to alcohol withdrawal. These people should be treated by following the Trust resuscitation guidelines. Information in this document does not override clinical judgement or professional liability. NICE (The National Institute for Health and Care Excellence) has published Quality Standards on “The epilepsies in adults (QS26)” and “The epilepsies in children and young people” (QS27). These documents link to published guidance and key documents. The NICE Guideline CG 137 (The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care) state that buccal midazolam or rectal diazepam should only be prescribed for use in the community for children, young people and adults who have had a previous episode of prolonged or serial convulsive seizures (NB the definition of “prolonged” or length of time since previous episode will vary according to whether it is a child or adult who is being considered). Buccal midazolam should be administered as first-line treatment in children, young people and adults with prolonged or repeated seizures in the community; rectal diazepam should be administered if preferred or if buccal midazolam is not available. 2. Definitions 1.1. Buccal- This is a cavity in the side of the mouth between the lower cheek and the gums. Medication is rapidly absorbed through the mucous membranes into the blood stream. 3. Duties / Responsibilities 3.1. Consultants and their medical team are responsible for approval and review of each individual’s Epilepsy Management Plan. This may also involve a specialist practitioner and input from acute Trust services, and/or the patients GP. If the individual is under the care of a neurologist outside of CCWPT this neurologist would be responsible for developing the Epilepsy Management Plan Page 3 of 35 3.2. Staff (i.e. staff members who are competent in the administration of buccal midazolam or rectal diazepam, or a paid carer who is assessed as competent to administer these medicines) who administer buccal midazolam or rectal diazepam in the treatment of epileptic seizures are responsible for following each individual’s epilepsy management plan. 4. Process 4.1. Process for the administration of Buccal Midazolam 4.1.1. An individual seizure management plan should be in place (example plan Appendix 2). 4.1.1.1. The seizure management plan should include: • Name • Seizure descriptions and possible triggers • Details of the person’s consent (or carer’s if appropriate) for the administration of buccal midazolam (if the person is unable to give consent, details of the outcome of a best interests meeting should be documented) • When buccal midazolam should be given • Dose to be given • How the person usually responds to treatment • Whether a repeated dose can be given and after what time interval • Maximum number of doses that can be given in 24 hours • When an ambulance should be called • Who else to contact/inform of the seizure 4.1.2. At all times staff/carers should act within the person’s care plan/seizure management plan. 4.1.3. Ensure the person has maximum privacy and dignity and this is retained throughout. 4.1.4. There should be a process in place to ensure that the bottle is checked regularly to ensure that the expiry date has not passed and that the liquid is clear. 4.1.5. Historically there was only one strength of buccal midazolam, 10mg in 1ml, specifically designed for the treatment of seizures. These products were unlicensed, and include Epistatus and UL Medicines Buccal Midazolam. 4.1.6. A new product, Buccolam, which contains midazolam 5mg in 1ml is licensed for the acute management of seizures in children. This product is available in pre-filled syringes. There is a risk of confusion due to the different strength of this product from those previously available. Page 4 of 35 4.1.7. To avoid confusion on writing FP10 prescriptions, buccal midazolam should be prescribed by brand. The strength and dose should always be stated. 4.1.8. Following review across the health economy, children newly initiated on buccal midazolam will be prescribed Buccolam; there will be a phased transfer of all children from the unlicensed product to Buccolam. Patients/carers will have to receive appropriate training, highlighting the difference in strength and hence volume required to administer the prescribed dose before the transfer. 4.1.9. No formulation of buccal midazolam is currently licensed in adults; a review regarding the transfer of adults to Buccolam will take place following completion of the phased child transfer. 4.1.10. If the unlicensed products are used, the person, next of kin and carers should be made aware of the unlicensed status of these brands. 4.1.11. The contents of midazolam ampoules should not be used for buccal administration. 4.1.12. Prepare the individual (and parent/carer as appropriate) for the procedure in advance, as this will not be possible during a seizure. 4.1.13. Obtain informed consent by discussing the procedure specific to the needs the individual taking into consideration their cognitive development - again in advance - it will not be possible to obtain consent during a seizure. Page 5 of 35 4.1.14. Procedure for the administration of buccal midazolam (steps 5 and 6 not required if Buccolam is the prescribed product) No. 1. 2. 3. 4. 5. 6. 7. 8. Action Hand decontamination will be done, as per Trust Policy, prior to carrying out any procedure – if possible. It is recognized that this is an emergency procedure. Note the time seizure starts and if possible write it down. Follow the person’s specific care plan or Epilepsy Management Plan (EMP) or protocol for instruction on when medication should be given – usually 5 minutes after start of seizure. Check when the person last had buccal midazolam as rescue treatment, ensuring that the minimum time interval between treatments has elapsed. Check the prescription sheet/pharmacy label against the drug, dosage and expiry date. Take extra care to check the strength of the product is correct. Withdraw prescribed dose of buccal midazolam from bottle using oral syringe provided. Replace cap on bottle immediately. If the cap is not replaced immediately the liquid will evaporate and some of the buccal midazolam will precipitate, showing as white particles in the liquid. The pack must not be used if the liquid is not clear. Rationale To minimize cross infection and promote health Support the head, open the person’s mouth, place syringe into buccal cavity and administer half the contents. Repeat above step, administering the remainder of the contents to the buccal cavity on the other side of the To increase the area for absorption of medication, which may increase speed of absorption To increase the area for absorption of medication, which may increase speed of To ensure accurate and effective delivery of the medication to the person To ensure accurate and effective delivery of the medication to the person To ensure accurate and effective delivery of the medication to the person To ensure accurate and effective delivery of the medication to the person To ensure medication is effective Page 6 of 35 No. Action mouth. 9. 10. 11. 12. 13. 14. NB: If person is on their side (for example lying in recovery position, or a focal seizure is forcing them onto their side) give all the medicine into the buccal cavity that they are lying on. Do not attempt to give half in each side. When Buccal Midazolam is administered for the FIRST TIME, please ring an ambulance. Ensure the person is allowed sufficient recovery time. Do not give a subsequent dose if the dose is expelled unless the care plan/Epilepsy Management Plan (EMP)/protocol details otherwise. Monitor for any adverse effects, effectiveness or lack of effectiveness of the dose. Follow the care plan/EMP/protocol if dose ineffective If the seizure does not stop within 10 minutes of giving Buccal Midazolam the person will need to go to hospital immediately. Thank the person, family/carer for their cooperation. 15. Record the procedure, care, outcome and actions in the person’s care records. 16. Record the time of administration and effects of buccal midazolam in the care plan/EMP (and prescription sheet if used), adding signature. Rationale absorption To minimize risk of medication being lost, swallowed or inhaled To ensure safety of person having the medication for the first time To ensure person’s safety following administration of medication To minimize risk of person receiving incorrect/extra dose To ensure person’s safety following administration of medication To ensure the person can receive further treatment under medical supervision To promote and maintain positive relationships with the person and family/carer. To maintain best practice regarding record keeping (NMC 2008) To ensure good communication Page 7 of 35 Dial 999 for an ambulance: • if you have concerns about the individual’s breathing • if they become injured and you have concerns for their safety • or as indicated in the seizure management plan • if you have administered more than the prescribed dose 4.1.15. Background information (see individual Data Sheets for full details) Midazolam is a short acting benzodiazepine. It has been used for the acute management of seizures, as an alternative to rectal diazepam1 2. The NICE CG20 guideline stated3 “For many individuals and in many circumstances, buccal midazolam is more acceptable than rectal diazepam and is easier to administer. It should be used according to an agreed protocol drawn up by the specialist and only used following training.” Initial effects become apparent after approximately 5 minutes, but may take up to 10 minutes. Paradoxical reactions e.g. agitation, restlessness and disorientation have been reported following administration. Somnolence may occur for up to 2 hours; if this lasts longer than two hours this should be documented and consideration should be made as to whether future doses should be reduced to a level that reduces somnolence but stops seizures. Contraindications include hypersensitivity to the active substance, benzodiazepines or to any excipients, myasthenia gravis, severe respiratory insufficiency, sleep apnoea syndrome, severe hepatic impairment Dosage should be individualised (e.g. if a child’s weight is markedly different from that expected for a particular age band). See the current BNF/BNF for Children for suggested doses. It is not licensed for use in children under 3 months. Although the BNF for Children/BNF state that these doses can be repeated once after 10 minutes, it is important to consider the impact of a delay in dialling 999 on the person experiencing a seizure. Repeat doses should only be administered if necessary and agreed in the seizure management plan. Contact the specialist epilepsy nurse or consultants with experience in the 1 Scott RC, Besag FM, Neville BG. Buccal midazolam and rectal diazepam for treatment of prolonged seizures in childhood and adolescence; a randomised trial. The Lancet 1999; 353:623-26 2 McIntyre J, Robertson S, Norris E , et al. Safety and efficacy of buccal midazolam versus rectal diazepam for emergency treatment of seizures in children: a randomised control trial. The Lancet 2005; 366:205-210 3 National Institute for Health and Clinical Excellence (NICE) 2004 CG20 The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care Page 8 of 35 management of epilepsy if you would like further advice on selecting a dose or dosage interval. Midazolam is classified as a Schedule 3 Controlled Drug. The main implications of this classification are on writing an outpatient or discharge prescription. These prescriptions must now state the dose, form, strength and a total quantity in words and figures. They will only be valid for 28 days (I.e. the prescription must be dispensed within 28 days of the date on the prescription). Midazolam does not need to be stored in a CD cupboard, and records do not need to be kept in a Controlled Drug Register. If midazolam is required for inpatient use, it must be ordered in the CD order book. Page 9 of 35 4.2. Process: Rectal diazepam 4.2.1. An individual epilepsy management plan should be in place (see example plan Appendix 2). 4.2.2. This epilepsy management plan should include: • Name • Seizure descriptions and possible triggers • Details of the person’s consent for the administration of rectal diazepam (if the person is unable to give consent, details of the outcome of a best interests meeting should be documented) • When rectal diazepam should be given • Dose to be given • How the person usually responds to treatment • Whether a repeated dose can be given and after what time interval • Maximum number of doses that can be given in 24 hours • When an ambulance should be called • Who else to contact/inform of the seizure 4.2.3. At all times staff/carers should act within the care plan/seizure management plan. 4.2.4. Ensure that the person has maximum privacy and dignity and this is retained throughout. 4.2.5. Consideration should be given as to whether rectal diazepam can be administered by a person of the opposite sex to the individual. If this is deemed to be inappropriate for the individual, this should be documented in the care plan and staffing arrangements made accordingly. 4.2.6. There should be a process in place to ensure that the rectal diazepam packaging is checked regularly to ensure that the expiry date has not passed. 4.2.7. Prepare the individual (and parent/carer as appropriate) for the procedure in advance, as this will not be possible during a seizure. 4.2.8. Obtain informed consent by discussing the procedure specific to the needs the individual taking into consideration their cognitive development - again in advance - it will not be possible to obtain consent during a seizure. Page 10 of 35 4.2.9. Procedure for the administration of rectal diazepam No. 1 2 3 4 5 6 7 8 9 10 11 Action Hand decontamination will be done, as per Trust Policy, prior to carrying out any procedure – if possible. It is recognized that this is an emergency procedure. Note the time seizure starts and if possible write it down. Follow the individual’s specific care plan or Epilepsy Management Plan (EMP) or protocol for instruction on when medication should be given – usually 5 minutes after start of seizure. Check when the person last had rectal diazepam as rescue treatment, ensuring that the minimum time interval between treatments has elapsed. Check the prescription sheet/pharmacy label against the drug, dosage and expiry date. Rationale To minimize cross infection and promote health. To ensure accurate and effective delivery of the medication to the individual To ensure accurate and effective delivery of the medication to the individual To ensure accurate and effective delivery of the medication to the individual Lie the adult on their side (or according to To make the person care plan). If the person is a child, refer to as comfortable as individual protocol. Ensure the dignity of possible and the person is maintained throughout. maintain dignity Put on disposable gloves. To minimize cross infection Remove the cap on the tube and gently To ensure the correct insert the entire length (or half if three dose is administered years of age or younger) of the nozzle into the rectum, pointing the spout downwards and squeezing the tube firmly between index finger and thumb. Keep the pressure on the tube for a few To ensure the correct seconds. dose is administered Keeping the tube squeezed, withdraw To ensure the correct tube from rectum. Press the buttocks dose is administered together gently for a time. Dispose of tube and gloves as per waste To ensure disposal policy. environment is protected Ensure the person is allowed sufficient To ensure Page 11 of 35 recovery time. 12 13 Monitor for any adverse effects, effectiveness or lack of effectiveness of the dose. Follow the epilepsy management plan (EMP)/protocol if dose ineffective (if there is no specific guidance and the dose is ineffective, dial 999 for an ambulance.) Thank the person, family/carer for their cooperation. 14 Record the procedure, care, outcome and actions in the individual’s care records. 15 Record the time of administration and effects of rectal diazepam in the care plan, EMP (and prescription sheet if used), adding signature. individual’s safety following administration of medication To ensure individual’s safety following administration of medication To promote and maintain positive relationships with the person and family/carer To maintain best practice regarding record keeping (NMC 2008) To ensure good communication Dial 999 for an ambulance: • if you have concerns about the individual’s breathing • if they become injured and you have concerns for their safety • or as indicated in the seizure management plan • if you have administered more than the prescribed dose 4.2.10. Background information (see current Summary of Product Characteristics (SPCs) for full information) Rectal diazepam is a benzodiazepine licensed for the treatment of seizures. It has a rapid onset of action (within 5 minutes). Paradoxical reactions e.g. agitation, restlessness and disorientation have been reported following administration. It is not licensed for use in children under 1 year of age. Contraindications include Myasthenia Gravis, hypersensitivity to benzodiazepines, severe or acute respiratory insufficiency/depression, sleep apnoea syndrome, severe hepatic insufficiency. Dose: See the current BNF/BNF for Children for suggested doses. The dose should be individualised; lower doses have been shown to be effective. Although dosage Page 12 of 35 intervals are listed, it is important to consider the impact of a delay in dialling 999 on the person experiencing a seizure. Contact the specialist epilepsy nurse or consultants with experience in the management of epilepsy if you would like further advice on selecting a dose or dosage interval. 5. Consultation This guidance has been developed in consultation with consultant paediatricians and learning disability psychiatrists, and specialist nurses, building on work with the previous Epilepsy Learning Disability Specialist Nurses; the Drugs and Therapeutics Committee. 6. Training and Support Training should be as described in the Joint Epilepsy Council document “A guideline on training standards for the administration of buccal midazolam”. It is recommended that all carers should have received training in epilepsy awareness and the administration of rectal diazepam/buccal midazolam as rescue medication. Joint Epilepsy Council (JEC) guidelines recommend that this training should be updated every 2 years. Administration should be in line with the Trust Medicines Policy. Unqualified social care staff must have received training in Epilepsy Awareness, buccal midazolam administration and rectal diazepam administration. It is regarded as best practice that qualified nurses should have received training in buccal midazolam administration. 7. References • • • • • • • • • • • • Summary of Product Characteristics Stesolid©. eMC accessed 03/02/2016 Summary of Product Characteristics:Diazepam Rectubes© eMC accessed 03/02/2016 NICE Guideline CG 137. The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care) 2012 NICE QS26. The epilepsies in adults 2013 NICE QS27. The epilepsies in children and young people 2013 BNF for Children 2015 2016 BNF 70 Report to Drugs and Therapeutics Committee 13th September 2013. Buccal Midazolam products-patient safety. D Tait. www.epilepsy.org.uk A Guideline on training standards for the administration of buccal midazolam. Joint Epilepsy Council Learning Disability Policy no 12. 2003 South Warwickshire PCT Administration of Epistatus© Buccal Midazolam – 10mg (Base) in 1ml sugar free syrup to people who have epilepsy. Colchester Learning Disabilities Service Page 13 of 35 • Policy on the safe administration of Epistatus© (Buccal Midazolam – 10mg in 1ml SF Syrup) to People who have Epilepsy. Humber Mental Health tNHS Trust 2006. 8. Trust Associated Documents • The Trust Medicines Policy and Associated Guidelines • The Trust Resuscitation Policy Page 14 of 35 Appendix 1 Guidance for the care of a person experiencing a seizure When attending a person experiencing a seizure it is important for the carer to manage the situation in an appropriate and competent manner. The aim is to minimise the risk of injury to the individual and others in the immediate vicinity and minimise the levels of embarrassment and anxiety. It is good practice to have a seizure description and management plan for all people with epilepsy. 1. Seizure types: Seizures can be individual to the person, and may not follow the descriptions below. Anyone who is responsible for the care of someone with epilepsy should have had a basic training in epilepsy, in line with the Joint Epilepsy Council (JEC) guidelines. A generalised seizure, which affects the whole brain, may present as an “absence” or a “tonic/clonic” seizure or a variety of others – myoclonic/tonic/atonic etc. There is complete loss of consciousness/awareness. A focal (partial) seizure affects part of the brain and can be simple or complex in nature. The signs and symptoms for each type of seizure are different. 1.1. Generalised seizure • Absence seizure This type of seizure is most common in children but can be seen in adults. The person may stare blankly into space and have slight twitching or eyelid fluttering. Objects being held may be dropped. They are unaware of their “absence”. This may be mistaken by others as daydreaming. There may be motor involvement, e.g. head dropping, walking. • Tonic/clonic seizure Typically, the seizures will present as convulsions. The person will become unconscious. The person may have an aura (e.g. fatigue or headache) which is familiar to him/her, but may not be able to communicate this. (a) Tonic Phase The body will stiffen. If standing, they will fall. The jaw will fix shut and the tongue or lips may be bitten and bleeding. Respiration may arrest Page 15 of 35 temporarily causing cyanosis and tachycardia. Pupils will be dilated and unreactive to light. (b) Clonic Phase Muscle contractions of the entire body, resulting in jerky movements. Eye rolling, facial grimacing and excessive salivation may occur. The person may be incontinent of urine. These seizures may vary in length and are individual to each person. On recovery, the individual will usually be tired and want to sleep. There may be a period of confusion. • Tonic seizure Muscles stiffen possibly causing a sudden fall. • Atonic seizure A sudden brief loss of muscle tone, which may result in a fall if standing. Recovery is quick. • Myoclonic seizure A brief contraction in muscles of a part of the body, causing a jerky movement. The movement may be isolated or repetitive. The jerking could be severe enough to make the individual fall. 1.2. Focal (Partial) Seizure Simple Focal (Partial) Seizure Consciousness is not impaired and the seizure is confined to either rhythmical twitching of a limb or part of a limb or to unusual sensations such as pins and needles in a distinct part of the body. Complex Focal (Partial) Seizure This may start with an “aura” or warning which may be visual, auditory, taste, etc. The person may have twitching, numbness, sweating,dizziness, nausea, disturbances to hearing, vision, smell, or a strong sense of déjà vu. The person may appear conscious but responsiveness may be impaired. These seizures may be varied in length and may be accompanied with abnormal movements such as plucking at clothing or smacking of lips. The person may wander about aimlessly and behave irrationally or appear to be confused. A complex focal (partial) seizure may develop into a secondary generalized seizure. The person will become unconscious and will usually have a tonic clonic seizure. A seizure description should be included in the person’s care plan or other documentation related to their epilepsy. Page 16 of 35 2 Care of the person experiencing a seizure At all times the epilepsy management plan/protocol should be followed. The points below give general instructions for care, which may be superceded by instructions in the management plan. Remain calm. Do not move the person unless they are in immediate danger. Remove dangerous objects away from them. Place a small pillow or other form of padding under the person’s head (if lying on the floor). Time and record seizures. Do not attempt to restrain convulsive movements of the limbs. Loosen restrictive clothing. Leave dentures in. Do not force anything between the teeth. The caregiver should be aware of any medication which has been prescribed for the emergency management of seizures and the criteria for administration. Maintain close observation and dial 999 for an ambulance if seizure is prolonged, significant injury has occurred, they have trouble breathing, or as detailed in the management plan. If the person is lying down, place in the recovery position as soon as the seizure is finished, if possible. As the person recovers from the convulsion explain to them what is happening. Remain with the person for at least 30 minutes after recovery, or as detailed in the management plan. Treat any injuries if sustained. As soon as possible remove soiled clothing and make the person comfortable. Fully record the event, including timings wherever possible. Page 17 of 35 Appendix 2 Example Epilepsy Management Plan Epilepsy Care Plan Name Date of Birth Address Telephone Epilepsy Care Plan date This care plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate. Mandatory pages are 1 and either 13, 14 or 15 (i.e. the relevant emergency plan). Circle below the page numbers that are included in this plan 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 Page 18 of 35 People involved in care: Family/Carer Community nurse: Address Address Telephone Telephone Care Provider GP Address Address Telephone Telephone Consultant Other Address Address Telephone Telephone Name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate. Page 19 of 35 Epilepsy Medication Dose Times Name Rescue medication Name Dose Please check medication recording sheet for most up to date list of medication used to treat other health conditions. Name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate. Page 20 of 35 Seizure descriptions: Type A Before seizure During seizure Duration: After seizure Type B Before seizure During seizure Duration: After seizure Name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate. Page 21 of 35 Type C Before seizure During seizure Duration: After seizure Type D Before seizure During seizure Duration: After seizure Name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date Page 22 of 35 This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate Triggers: Additional information e.g. frequency/pattern Sudep discussed? Yes No If no, document reason in notes name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate. Page 23 of 35 Seizure Diary :Year ……. Jan Feb Mar Apr May Jun Jul Aug Sept Oct Nov Dec 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 Name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate. Page 24 of 35 First Aid for Seizures involving a fall or loss of consciousness If ………………… has a seizure please… Do this 9 Make. comfortable 9 Make sure the airway is clear 9 Support and protect the head 9 Move objects that could be harmful DO NOT Put anything in his/her mouth Restrain any movements Move him/her unless in danger Give anything to eat or drink until he/she is fully awake 9 Loosen tight clothing and remove any glasses 9 Talk to him/her and give reassurance 9 Follow the emergency protocol Following a seizure… 9 9 9 Put him/her in the recovery position when the movements have stopped Stay with him/her. until he/she is fully awake but forat least 30 minutes Record details in file and diary Name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate. Page 25 of 35 First Aid for Focal (Partial) Seizures If …………………………. has a seizure Do this DO NOT 9 Guide him/her away from any danger Restrain him/her 9 Stay with him/her until fully recovered 9 Be calm and reassuring Act in a way that could frighten him/her Attempt to bring him/her round Assume that he/she. is aware of what is happening Give anything to eat or drink until he/she is fully awake 9 Explain anything he/she may have missed 9 Follow the emergency protocol Following a seizure… 9 9 Explain anything he/she may have missed Record details in file and diary name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate. Page 26 of 35 If ………….has an increase in the frequency of seizures please record them on the seizure chart and contact GP, consultant or epilepsy nurse for advice. Capacity assessment/best interests decision Please include here details of any relevant decisions made. Additional Information Name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate Page 27 of 35 SUDEP Information sheet What is SUDEP? Sudden Unexpected Death in Epilepsy is when a person with epilepsy dies suddenly with no other cause to their death found. People with a learning disability and epilepsy have a higher risk of SUDEP. The risk is lowered in those with well controlled seizures. An audit identified the following risk factors for SUDEP: • • • • • If you are a young adult If you do not take your epilepsy medication as directed If there are sudden changes to your epilepsy medication If you only have seizures at night when you are sleeping or when you wake up If you have tonic clonic seizures Ways to reduce your risk of SUDEP: • • • • • Take your epilepsy medication when you should. Have clear guidelines of epilepsy medication changes from your GP, Consultant or epilepsy nurse. Keep an accurate diary of your seizures, the frequency, duration and description if possible. Do not drink too much alcohol Access epilepsy services It is not yet certain whether alarms or monitors, which may alert others if you are having a seizure, are effective in preventing SUDEP. Please discuss with your doctor/nurse/care team if you are considering buying one. More information is available online at: https://www.sudep.org/alarms-and-monitors name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate. Page 28 of 35 Record o Name Name D.O.B dd/mm/yy Date of training Training provided by NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate. Page 29 of 35 Emergency Epilepsy Plan Emergency Protocol –NO PRN (rescue) medication ……………….. is not prescribed any PRN medication CALL AN AMBULANCE (dial 999) (request a paramedic ambulance) if he/she has a convulsive seizure (“jerks” or “thrashes”) that lasts longer than or or or or …….. has another seizure without recovering has injured himself/herself becomes cyanosed ( blue around lips) If you become concerned about him/her Other advice: Signed Prescribing Doctor Signed Nurse date date Signed Patient Signed Carer Name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate. Page 30 of 35 Emergency Epilepsy Plan Emergency Protocol– with PRN medication Protocol for the administration of Rectal Diazepam Seizure type/s: Usual duration of seizure: After how long or how many seizures should rectal diazepam be given? Dose of rectal diazepam (in mgs) When to call for an ambulance. Who to contact/inform (e.g. family member, carer) Special instructions Review date: Signed Prescribing Doctor Signed Nurse date date Signed Patient Signed Carer Name D.O.B dd/mm/yy NHS No Epilepsy Management Plan date This management plan is intended to be used as a complete document: non-relevant pages may be removed if clinically appropriate Page 31 of 35 Emergency Epilepsy Plan Emergency Protocol– with PRN medication Protocol for the administration of Buccal Midazolam (Specify Brand) Seizure type/s: Usual duration of seizure: Brand name of Midazolam After how long or how many seizures should Buccal Midazolam be given? Dose of Buccal Midazolam (in mgs) When to call for an ambulance Who to contact/inform (e.g. family member, carer) Special instructions (e.g. should procedure be witnessed, situations when Midazolam should not be used) IMPORTANT!!!!! When Buccal Midazolam is administered for the FIRST TIME, dial 999 for an ambulance. Review date: Signed Prescribing Doctor date…… Signed Patient Signed Nurse date…… Signed Carer Name D.O.B dd/mm/yy NHS No This management plan is intended to be used as a complete Epilepsy Management Plan date document: non-relevant pages may be removed if clinically appropriate Page 32 of 35 Appendix 3 Good Practice Guidelines: For Paid Carers who Administer Buccal Midazolam Good Practice Guidelines: For Paid Carers who Administer Buccal Midazolam Liquid • Buccal Midazolam is a licensed medication used outside its licence for the emergency treatment of epilepsy. • Any concerns and side effects must be reported to the prescribing doctor. • Midazolam is available in multi-dose bottle with syringes under the brand names of Epistatus /Suptamid and generic buccal midazolam liquid made by UL Medicines • Midazolam is a schedule 3 controlled drug. The implications of this are: Prescriptions must be dispensed within 28 days of issue. There are no storage implications for Midazolam. However, we would recommend it is stored in a locked cupboard and a record of stock is kept for monitoring. • All carers who are expected to administer Buccal Midazolam should be suitably trained (as per JEC (Joint Epilepsy Council) guidelines) by a designated nurse. • Paid carers should have attended an epilepsy awareness training session in the last 2 years or appropriate fresher (JEC standards) • Staff must also have completed own organisation medication and first aid training. Buccal Midazolam training will not be given to staff who do not meet this standard. Page 33 of 35 Training will be provided to small groups of carers, with individual time spent on service users emergency protocols. • All patients prescribed buccal midazolam should have an epilepsy management plan (EMP) that includes an emergency protocol that clearly defines when/how much to administer. • Carers should maintain accurate administration of buccal midazolam. records of seizure activity and the Organisational Responsibilities o o o o o o o o • Organisations should have clear policies and procedures in place for the management of epilepsy and emergency treatments The organisation that employs the carers should provide supervision and support to carers in the course of their duties. Organisations are responsible for arranging /facilitating epilepsy awareness and buccal midazolam training and refreshers for their staff. Organisations must ensure that any staff who are nominated to attend buccal midazolam training have attended epilepsy awareness training and meet organisational standards in medication and first aid before attending session To facilitate appropriate risk assessments. Follow medication policies; ensure medication is correctly labelled, stored, in date and disposed of correctly. Regularly check that medication is in date, has not crystallized or gone cloudy. Discard and replace if required. Ensure EMP’s / emergency protocol is in date and reviewed; the epilepsy team must be contacted one month prior to EMP review date to arrange review date. Carers responsibilities o To attend all training as directed. o To always adhere to organisational policies and procedures. o To follow the EMP (epilepsy management plan) and emergency protocol. o Work within individual competence, identifying and reporting any gaps in skills and competence Page 34 of 35 • Epilepsy Team Responsibilities o To offer medical/nursing review of epilepsy and treatment o Keep abreast of any developments in epilepsy management and use of buccal midazolam o To implement and review management plans and emergency protocols as required o Offer access to epilepsy awareness training and buccal midazolam training o Ensure all training meets national standards o Provide documents for monitoring use of buccal midazolam Supporting information/guidance JEC: A Guideline on the training standards for the administration of Buccal Midazolam EMP Emergency protocol Procedure for the administration of buccal midazolam Stock record for Buccal Midazolam Liquid Record of trained staff Evaluation Sheet and record of use of epistatus Epistatus drug information (document originally produced by the Epilepsy Team, Learning Disability Service, Caludon Centre) Page 35 of 35
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