Current Epilepsy Health Record

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Samuel Welch
5 years ago
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1 NAME: Current Epilepsy Health Record Date plan commenced:

2 My carers/parents have have not helped me complete my Epilepsy Health Record 2

3 CONTENTS Emergency Plan Personal Details Medical Information Professionals Involved Diagnosis of Epilepsy Current Medication INDEX PAGE Previous Anti-convulsant Medication Rescue Medication Alternative Therapy Usual Seizure Pattern Seizure Management Seizure Checklist Overview Information About My Epilepsy Precipitating Factors Risk Checklist Risk Assessments Information/Advice Given Hospital Admissions Investigations: Blood Levels Drug Levels Scans and Investigations Epilepsy Surgery Health Action Plans -Epilepsy Comments/questions Acknowledgements Contacts 3

4 EMERGENCY PLAN Please see my JEC Care Plan (or equivalent) for more detailed information. I have epilepsy and experience the following types of seizures: If you should find me in a seizure, please take the following steps: Make sure I am safe remove any dangers Do not move me unless I am in danger clearing all furniture and objects out of my way. Place a cushion underneath my head Talk to me Allow me to come out of my seizure If I do not come around after minutes, please call an ambulance or administer rescue medication if you are able to do so (record medication given) After I come out of my seizure, place me in the recovery position Please contact my next of kin/main carer Please wipe away any mucus Stay with me until I have fully recovered Please time my seizure and observe seizure type Advise either my carer or paramedic staff of the seizure type and time DO NOT PANIC 4

5 PERSONAL DETAILS NAME: DATE OF BIRTH: MALE/FEMALE ADDRESS: TELEPHONE NO: NEXT OF KIN: RELATIONSHIP: CONTACT NO: MAIN CARER (if applicable) ADDRESS OF MAIN CARER: CONTACT NO: FIRST LANGUAGE: METHOD OF COMMUNICATION: INTERPRETER REQUIRED: RELIGION: YES/NO PRACTICING ETHNICITY: 5

6 MEDICAL INFORMATION CAUSE OF LEARNING DISABILITY BLOOD GROUP TYPE: KNOWN ALLERGIES: HEIGHT: WEIGHT: RESCUE MEDICATION REQUIRED YES/NO (SEE APPRORIATE PAGE FOR DETAILS) GENERAL PRACTITIONER NAME: TELEPHONE NO: ADDRESS: SPECIALIST INVOLVED IN EPILEPSY MANAGEMENT: TYPE OF SPECIALIST: ADDRESS OF SPECIALIST: TELEPHONE NO. OF SPECIALIST: ADDRESS WHERE MAIN CASE NOTES HELD RE MANAGEMENT OF EPILEPSY: NURSE INVOLVED IN EPILEPSY MONITORING AND SUPPORT TELEPHONE NO. WHERE CASE NOTES HELD: 6

7 PROFESSIONALS INVOLVED IN MY CARE THE FOLLOWING PEOPLE HELP ME TO MANAGE MY HEALTH AND SOCIAL CARE NEEDS: NAME POSITION WORKPLACE TELEPHONE NO. FREQUENCY OF APPOINTMENTS THE FOLLOWING PEOPLE HELP ME TO MANAGE MY EPILEPSY: NAME POSITION WORKPLACE TELEPHONE NO. FREQUENCY OF APPOINTMENTS 7

8 DIAGNOSIS OF EPILEPSY I HAD MY FIRST SEIZURE AT THE AGE OF: MY DIAGNOSIS OF EPILEPSY WAS CONFIRMED ON: DIAGNOSIS OF EPILEPSY IS BASED ON THE CAUSE OF MY EPILEPSY IS SEIZURE TYPE AND SYNDROME CURRENTLY DIAGNOSED SNAPSHOT OF PAST SEIZURE HISTORY INFORMATION TAKEN FROM MEDICAL RECORDS: 8

9 CURRENT MEDICATION ANTI-CONVULSANT MEDICATION DOSE & SCHEDULE PREPARATION DATE INITIATED REASON FOR MEDICATION SIDE EFFECTS EXPERIENCED OTHER CURRENT MEDICATION MEDICATION DOSE & SCHEDULE PREPARATION DATE INITIATED REASON FOR MEDICATION SIDE EFFECTS EXPERIENCED 9

10 PREVIOUS ANTI-CONVULSANT MEDICATION PRESCRIBED MEDICATION DOSE & SCHEDULE DATE COMMENCED DISCONTINUED REASON FOR DISCONTINUATION 10

11 PREVIOUS MEDICATION PRESCRIBED MEDICATION DOSE & SCHEDULE DATE COMMENCED DISCONTINUED REASON FOR DISCONTINUATION 11

12 RESCUE MEDICATION MEDICATION DOSE & SCHEDULE PREPARATION DATE INITIATED REASON FOR MEDICATION At times I may go into status epilepticus or have recurrent seizures If I do not come out of a seizure state after minutes, I need the above medication (see JEC plan). The medication has to be administered ORALLY/RECTALLY/NASAL ALTERNATIVE THERAPIES The following alternative therapy regimes can help to control my epilepsy Ketogenic diet yes/no see attached sheet Acupuncture yes/no Other therapies yes/no MEDICATION SCHEDULE MANAGED BY DATE INITIATED COMMENTS 12

13 USUAL SEIZURE PATTERN THIS IS AN OVERVIEW OF MY USUAL SEIZURE PATTERNS PARTIAL NUMBERS (clusters) FREQUENCY Monthly average FREQUENCY Yearly average USUAL DURATION AGE OF ONSET DIAGNOSIS BASED ON GENERALISED NUMBERS (clusters) FREQUENCY Monthly average FREQUENCY Yearly average USUAL DURATION AGE OF ONSET DIAGNOSIS BASED ON SECONDARY GENERALISED NUMBERS (clusters) FREQUENCY Monthly average FREQUENCY Yearly average USUAL DURATION AGE OF ONSET DIAGNOSIS BASED ON Please see my Seizure Diary and Monitoring Forms for further information. 13

14 NON-EPILEPTIC EVENTS I do I do not have non-epileptic events. NUMBERS (clusters) FREQUENCY Monthly average FREQUENCY Yearly average USUAL DURATION AGE OF ONSET DIAGNOSIS BASED ON Description of event:- These non-epileptic events are described by: SEIZURE CONTROL seizures comment I do /do not think my seizures are well controlled. My carers do /do not think my seizures are well controlled My best seizure control was My medication at the time was My blood levels at the time were My worst seizure control was My medication at the time was My blood levels at the time were 14

15 SEIZURE MANAGEMENT OVERVIEW GENERALISED SEIZURE TYPE (Please see JEC Care Plan for more detailed information) PRECIPITATING FACTORS (triggers) BEFORE THE SEIZURE WARNINGS SEIZURE DESCRIPTION (overview) DURING THE SEIZURE SEIZURE RECOVERY PERIOD (description) AFTER THE SEIZURE SOMETIMES I REQUIRE RESCUE MEDICATION ACTION TAKEN There is a written management plan in place YES NO For seizures (when emergency medication is not prescribed) YES NO There is an emergency management plan? YES NO Is the emergency management plan ORAL RECTAL BUCCAL (DELETE WHERE APPROPRIATE) 15

16 SEIZURE MANAGEMENT OVERVIEW PARTIAL SEIZURE TYPE (Please see JEC Care Plan for more detailed information) PRECIPITATING FACTORS (triggers) BEFORE THE SEIZURE WARNINGS SEIZURE DESCRIPTION (overview) DURING THE SEIZURE SEIZURE RECOVERY PERIOD (description) AFTER THE SEIZURE SOMETIMES I REQUIRE RESCUE MEDICATION ACTION TAKEN There is a written management plan in place YES NO For seizures (when emergency medication is not prescribed) YES NO There is an emergency management plan? YES NO Is the emergency management plan ORAL RECTAL BUCCAL (DELETE WHERE APPROPRIATE) 16

17 SEIZURE CHECKLIST OVERVIEW PRE-SEIZURE Y N N/A COMMENTS Aura taste/smell/nausea/tingling Associated with stress Behaviour change Mood change Aura taste/smell/nausea/tingling Associated with stress Sleep pattern change Lethargy Constipation Associated with menstruation Illness Sleep pattern change Lethargy Automatisms Vocalisation Scream/cry/laughing DURING SEIZURE Loses consciousness Remains conscious Y N N/A COMMENTS 17

18 Cyanosis Face pale Face flushed Staring on onset Eye movement/deviation Which direction Do they fall Atonic (floppy) Tonic (rigid) Rhythmical jerking Brief spasms Automatisms Incontinence Behavioural issues Where? All or part of limbs/ body (where) (where) AFTER SEIZURE Is the person confused Does the person sleep Aggression Automatisms Headache Amnesia Paralysis Mood alteration Y N N/A COMMENTS 18

19 YEAR SEIZURE CHECKLIST OVERVIEW SEIZURE TYPE Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec Seizure free Days YEAR SEIZURE TYPE Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec Seizure free Days YEAR 200. SEIZURE TYPE Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec Seizure free Days YEAR 200. SEIZURE TYPE Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec Seizure free Days My seizures are well controlled YES NO My last seizure was on 19

20 RESCUE MEDICATION OVERVIEW YEAR: Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec RESCUE MEDICATION YEAR: Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec RESCUE MEDICATION YEAR: Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec RESCUE MEDICATION YEAR: Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec RESCUE MEDICATION YEAR: Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec RESCUE MEDICATION YEAR: Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec RESCUE MEDICATION YEAR: Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec RESCUE MEDICATION YEAR: Jan Feb Mar April May Jun July Aug Sept Oct Nov Dec RESCUE MEDICATION HAS THERE BEEN OCCASIONS WHERE THE EMERGENCY MEDICATION HAS NOT BEEN EFFECTIVE? 20

21 RECORDING OF SEIZURES comments I can I cannot keep a record of my own seizures. My seizures are recorded in The details of the record includes The records are portable YES NO INFORMATION ABOUT MY EPILEPSY comments I have /have not been given information regarding my epilepsy. My carer/parent has not been given information regarding my epilepsy. I need more information on My carer needs more information on 21

22 PRECIPITATING FACTORS I HAVE EPILEPSY, MY SEIZURES MAY BE TRIGGERED BY THE FOLLOWING FACTORS TRIGGERS YES NO COMMENT Alcohol (too much/withdrawal) Boredom Constipation Sleep (lack of/irregular patterns/disturbed) Illness Infections Temperature Pain Low blood sugar Missed meals Medication (not taking/missing/delay of Administration) Photosensitivity Stress Excitement Fear Anxiety Menstruation/menopause Other things noted such as regular time, food, and days of occurrence 22

23 MEDICATION Have you had any recent medication changes in the general regime Has there been any recent change in your AED medication Do you take daily Barbiturates Do you take daily Benzodiazepines Do you take Phenytoin Do you take more than one AED Are you compliant with your medication Are you prescribed emergency medication? Has this ever not been effective resulting in a need to visit A and E GENERAL HEALTH Do you suffer with depression Do you have a history of cardiovascular disease Are you dependent on alcohol or drugs Do you have frequent falls Do you have head injuries from epilepsy Do your seizures increase when you have a period GENERAL SAFETY ISSUES RISK CHECKLIST YES NO MANAGEMENT PLAN NEEDED MANAGEMENT PLAN IN PLACE Swimming Cookers Showers Bathing Stairs Fires Electrical equipment TV Computer Furniture Glass doors Garden Employment safety Road safety Travel Live alone Sleep alone EPILEPSY RISKS Do you have a high seizure frequency Do you have a history of status epilepticus Do you have a history of prolonged seizures Do you have a history of repeated / cluster seizures Do you have nocturnal seizures Do you have unobserved seizures Do you have a high seizure frequency SUDEP Completed by.. Date 23

24 EPILEPSY RISK ASSESSMENT (Source Midlands Focus in Epilepsy and Learning Disabilities 2001) NAME OF PERSON HELPING ME COMPLETE THIS FORM ROLE RISK FACTORS H/ M /L RISK REDUCERS RESOURCE IMPLICATIONS 1/ 2/ 3 DATE COMPLETED COMMENTS ACTION OUTCOME KEY H HIGH 1 EASILY ACHIEVABLE M MEDIUM 2 ACHIEVABLE WITH TIME/RESOURCE L LOW 3 NOT ACHIEVABLE BEYOND LIMITATIONS 24

25 INFORMATION/ADVICE GIVEN INFORMATION DATE COMMENTS SIGNATURE 25

26 HOSPITAL ADMISSIONS RELATED TO EPILEPSY PLEASE COMPLETE FOR EPILEPSY RELATED HOSPITAL ADMISSIONS ONLY DATE OF ADMISSION NAME OF HOSPITAL REASON FOR ADMISSION COMMENTS DATE OF DISCHARGE 26

27 BLOOD LEVELS PLEASE COMPLETE WHEN UNDERTAKING BLOOD TESTS IN RELATIONS TO EPILEPSY MANAGEMENT TYPE OF TEST DATE OF TEST DATE TESTS RECIEVED RESULTS/COMMENTS SIGNATURE Full blood count Urea & Electrolytes Liver function test Thyroid function test Amylase Other DRUG LEVELS INVESTIGATIONS PLEASE COMPLETE WHEN UNDERTAKING INVESTIGATIONS IN RELATION TO ANTI-EPILEPTIC DRUGS DRUG NAME DATE OF TEST DATE RESULTS RECIEVED RESULTS/COMMENTS SIGNATURE 27

28 SCANS AND INVESTIGATIONS I HAVE HAD THE FOLLOWING SCANS AND INVESTIGATIONS IN RELATION TO MY EPILEPSY TYPE OF TEST DATE OF TEST RESULTS OF TEST EEG COMMENTS NAME/SIGNATURE EEG EEG Sleep deprived EEG Ambulatory EEG MRI CAT Scan Video telemetry PET Scan Angiogram OTHER 28

29 EPILEPSY SURGERY I HAVE HAD THE FOLLOWING SURGERY IN RELATION TO MY EPILEPSY TYPE OF SURGERY DATE HOSPITAL RESPONSIBLE MEDICAL OFFICER COMMENTS COMMENTS I CURRENTLY HAVE A VAGAL NERVE STIMULATOR FITTED 29

30 HEALTH ACTION PLAN EPILEPSY HEALTH NEED 30

31 COMMENTS / QUESTIONS THIS PAGE HAS BEEN LEFT BLANK IN ORDER FOR YOU TO WRITE DOWN ANY QUESTIONS YOU MAY WISH TO ASK THE DOCTOR/NURSE AT YOUR NEXT APPOINTMENT DATE COMMENT/QUESTIONS 31

32 ACKNOWLEDGEMENTS Information provided as a service to medicine by UCB Pharma. Page 12 Source North West Epilepsy Forum 2002 MAU Chalfont Centre Buckinghamshire 32

33 CONTACTS Epilepsy Action (British Epilepsy Association) New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY. Tel: Helpline Tel: Epilepsy Action Belfast Regional Office Graham House, Knockbracken Health Care Park, Saintfield Road, Belfast BT8 8BH. Tel: Epilepsy Bereaved PO Box 112, Wantage, Oxon OX12 8XT. Tel: hour Answering Service: National Centre for Young People with Epilepsy St Piers Lane, Lingfield, Surrey RH7 6PW. Tel: National Society for Epilepsy Chesham Lane, Chalfont St Peter, Buckinghamshire SL9 0RJ Tel: Fax: Colchester Community Learning Disabilities Team Heath House, Grange Way, Colchester CO2 8GU Tel: Fax:

Epilepsy Care Plan. Name. Date of Birth. Address. Telephone. Example Epilepsy Management Plan. Epilepsy Care Plan date

Epilepsy Care Plan. Name. Date of Birth. Address. Telephone. Example Epilepsy Management Plan. Epilepsy Care Plan date 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