Berkshire West Primary Care Trusts EPILEPSY AND RECTAL DIAZEPAM

1. Berkshire West Primary Care TrustsEPILEPSY AND RECTAL DIAZEPAM UPDATE TRAINING Berkshire West Primary Care Trusts is a collaboration between Newbury and Community, Reading and Wokingham PCTs

2. OVERALL AIM The carers will understand the principles and safety aspects that relate to the administration of ‘Diazepam rectal tubes’. N.B. Within the session it will not be possible to deem participants competent to administer Diazepam rectal tubes, however, participants will be provided with a theoretical knowledge base and a video demonstration of the technique

3. LEARNING OUTCOMES(1) By the end of this session the participants will: • Have knowledge of the different types of epileptic seizures • Recognise and describe a tonic/clonic epileptic seizure • Describe the principles of managing an epileptic seizure • Describe the impact of epilepsy on lifestyle

4. DEFINITION OF EPILEPSY “A tendency to recurrent seizures due to a brain disorder” (Oxley and Smith, 1991) The physical symptom of something else, and that something else could be one of dozens of causes which may be known or unknown

5. EPILEPSY IS VERY INDIVIDUAL • It can happen to anyone at anytime • It affects all areas of the population • Young/old • Male/female

6. PREVALENCE “1:131 people are affected by epilepsy – approximately 456,000 in UK” (Epilepsy Action 2005) Approximately 30-50% of people who have severe learning difficulties are affected. “Tonic-clonic seizures affect 60% of people who have epilepsy” (Brown et al, 1993)

7. FACTORS WHICH CAN PRECIPATE EPILEPSY • Stress • Boredom • Alcohol • Missed medication • Lack of sleep • Menstruation • Photosensitivity • Missed meals

8. WHAT IS A SEIZURE? The result of intermittent and abnormal bursts of electrical activity within the brain

9. SEIZURE Partial Generalised Seizure activity Seizure activity starts in one part involves the of the brain whole brain

10. PARTIAL SEIZURE Simple Complex With secondary Generalisation Seizure activity Seizure activity Seizure activity while the person with change in begins in one is alert awareness of area and surroundings spreads to whole brain

11. GENERALIZED SEIZURE Absence Myoclonic Tonic-clonic Tonic Atonic Staring and blinking without falling Stiffening, falling and jerking of the body Stiffening, tends to fall backwards if standing Falling heavily to the ground Jerking movements of the body

12. STAGES OF TONIC/CLONIC SEIZURES AURA: a warning sign (not always present) TONIC: muscles stiffen and the person may fall to the ground. Breathing temporarily stops CLONIC: period of jerking movement. Breathing returns (not normal and noisy) RESTING the person may be drowsy, may sleep, PERIOD:may show evidence of confusion, or may exhibit disturbed or challenging behaviour

13. WHEN THE SEIZURE STARTS:- • Note the time • Clear a space around the person, moving objects which may be harmful • Reassure others and explain what you are doing • Make the person comfortable • Cushion the head to prevent facial injury • Loosen tight neckwear • Remove spectacles and high heeled shoes if worn

14. WHEN THE MOVEMENTS HAVE STOPPED:- • Turn the person on their side (first aid recovery position) • Wipe away any excess saliva from the mouth • Check that vomit or dentures are not blocking the throat

15. AT THE END OF THE SEIZURE:- • Reassure the person if they seem confused and tell them what has happened • Check for signs of injury and apply first aid, if necessary • Observe the person and stay with them until recovery is complete (they may need assistance to return to their routine or find their way home) • Provide privacy and offer assistance if there has been incontinence

16. RECOVERY • Some people have seizures which put them temporarily into a state of altered consciousness • Behaviour may seem inappropriate e.g. they may wander around aimlessly with a glazed expression • During this type of seizure, the person should be accompanied and gently led away from any source of danger

17. DO NOTS:- DO NOT put anything in the mouth DO NOT restrain or restrict movement during the seizure DO NOT give anything to eat or drink DO NOT move the person unless in danger * Seizures are self limiting and cannot be stopped once they have started

18. EMERGENCIES Seizures may last for only a few seconds or for several minutes. Allow the person to recover in their own time It is not usually necessary to call a doctor or ambulance when a person known to have epilepsy, has a seizure that follows their usual pattern

19. EMERGENCIES Call an ambulance if:- • A seizure lasts more than 5 minutes and you do not know the usual length of the persons seizures • A major seizure follows another without full recovery in between, and emergency medication has not been prescribed or been effective • Concussion/head injury is suspected • Water or vomit might have been inhaled (e.g. in a bath or pool)

20. LIFESTYLE IMPLICATIONS IN CHILDHOOD:- Prejudice Education Leisure/sports Effects on family

21. LIFESTYLE IMPLICATIONS IN ADOLESCENCE Psychological effects: • Anxiety • Depression • Resentment • Irritability • Loss of self esteem • Relationship difficulties

22. LIFESTYLE IMPLICATIONS IN ADULTHOOD Employment Driving Safety – home/work/leisure Relationships Life insurance

23. ORGANISATIONAL POLICY/PROCEDURE • Medication charts - special instructions - exact specifications about when to administer the diazepam rectal tube - dosage, strength, route • What to do if the medication has no effect • Who, when and how to contact the relevant personnel • What to do when working alone

24. PERSONAL PROFILE • Triggers • Warning • How often do the seizures/fits occur? • Pattern e.g. day/night or both • What happens during the seizures/fit? • How long does it last? • Usual recovery time • Prescribed medication i.e. rectal tubes • Who records the seizure/fit? • Who should be contacted afterwards?

25. SEIZURE MONITORING OBSERVATION – BEFORE • Aura/unusual sensation • Automatisms • Change in sleep pattern • Behaviour change • Lethargy

26. SEIZURE MONITORING OBSERVATION – DURING • Automatisms (lipsmacking, chewing, confused behaviour) • Rigidity • Floppy • Involuntary/jerky movements (face, whole body, left arm, right arm, left leg, right leg) • Cyanosis • Cold and clammy • Froth at mouth • Change in level of consciousness • Change in breathing patern • Glazed/fixed stare • Unusual sounds • Grind teeth • Bite tongue • Scream/Cry out • Undressing

27. SEIZURE MONITORING OBSERVATION – AFTER • Confusion • Aggression • Drowsy • Headache • Tearful • Alteration in appetite • Thirsty • Hyperactive • Partial seizures • Automatisms

28. SEIZURE MONITORINGOBSERVATIONSheet ThreeClient Name ……………………………………………………………….. DoB ………………………………

29. INJURYPlease record any injury sustained during a seizure

30. STATUS EPILEPTICUS Can be defined as:- A series of seizures without the person regaining consciousness or breathing properly between attacks “Any seizure that has a duration of at least 30 minutes or, intermittent seizures lasting for 30 minutes or longer, from which the person does not regain consciousness” (Pellock, 1994) This can be life threatening and therefore requires urgent medical attention SERIAL SEIZURES These are seizures occurring one after another without normal breathing and recovery in between.

31. LEARNING OUTCOMES(2) • Accurately describe the difference between status epilepticus and serial seizures • Describe their organisational policy/procedure for responding to status epilepticus/serial seizures • Describe the procedure for rectal tube insertion • List the possible problems with rectal tube insertion • Describe the ethical implications of a potentially invasive procedure • Identify the problems of working alone

32. DIAZEPAM USED FOR Sedative properties Anxiety states Pre-medication Muscle spasm Status epilepticus Non-convulsive status Serial seizures

33. DIAZEPAM ROUTES FOR ADMINISTRATION Oral Intra-muscular Intravenous Rectally NB The person should be allowed to rest following administration and be constantly observed

34. SIDE EFFECTS MOST COMMON Sedation Dizziness Headaches Confusion Drowsiness Slurred speech Light-headedness Trembling hands Unsteadiness Hangover effect

35. SIDE EFFECTS OCCASIONAL Dry mouth Problems passing urine Increased appetite Slow pulse Skin rashes Reduced libido Stomach upset Menstrual problems Low blood pressure Chest pain Hyperactivity in children Difficulty with breathing Visual disturbance Airway spasm Jaundice

36. RECTAL DIAZEPAM TUBES • How they work • Storage • Pre-administration check a) prescription chart b) exact instructions c) strength d) expiry date e) route The above must be checked on a regular basis to ensure maximum safety i.e. monthly Gloves, prescription chart and rectal tubes should be stored in close proximity

37. PROCESS OF INSERTION(1) • In between seizures/fits lay the person on their side • Bring knees up to the chest as far as possible without force • Upper leg to be raised slightly higher than lower leg • Locate anus • Open tube by holding on its side and twisting off the top – insert tube into rectum (fully for adult, half way for child

38. PROCESS OF INSERTION(2) • Squeeze tube slowly but firmly between finger and thumb • Withdraw slowly, still squeezing tube • Hold buttocks together following administration • If good effect, place person in recovery position • Monitor recovery • Sign prescription chart • Inform identified persons

39. POSSIBLE PROBLEMS • Tension of anus • Inserting the rectal tube too quickly e.g. spasm • Seizure re-starts • Constipation • Rectal prolapse

40. ETHICAL CONSIDERATIONS • Potentially invasive procedure • Gender issues • Consent • Privacy/dignity

41. CONTACT DETAILS READING LOCALITYFiona Simpson/Barbara Chandler, Reading Community Team for People with Learning Disability, PO Box 2624, Reading, RG1 7WB  0118 955 3742 NEWBURY LOCALITY Nicky Macdonald, Newbury Community Team for People with Learning Disability, Northcroft Wing, Avonbank House, West Street, Newbury, RG14 1BZ  01635 503120 WOKINGHAM LOCALITY Mary Codling, Wokingham Team for People with Learning Disability, 2nd Floor, Wellington House, Wellington Road, Wokingham, RG40 2AG  0118 974 6832/0118 949 5000

43. CASE STUDY ONE A man whom you care for was thrown off his horse a week ago. He remembers flying through the air and being helped up. The carer who was with him says that he was out for about 3 or 4 minutes. He had been wearing a helmet which was undamaged. Six hours later he had a generalised tonic clonic seizure witnessed by care staff and a further one at Accident and Emergency. He was given Phenytoin and a computerised Tomography (CT) scan was normal. He was observed overnight and remained well on Phenytoin 300mg a day. Examination has been normal

44. CASE STUDY ONE You want to know • Does he now have a diagnosis of epilepsy? • What follow up would you expect? • Can he resume normal activities such as horse riding? If so, when • Now • 3 months time • 12 months time

45. CASE STUDY TWO A 20 year old female has moved into your residential home from another area. She has had epilepsy since the age of two. She currently has 2-3 seizures a week. She also has severe behaviour difficulties and has sustained injuries on a number of occasions. She has a history of Status Epilepticus and in the past has nearly died. Her parents are very involved in her care and visit on a regular basis. However, no notes have followed her recent transfer so staff have to rely on parents for an account of her history and current seizures. She has just been referred to a neurologist to review her current situation. You will be accompanying her to the appointment but are concerned about your lack of information.

46. CASE STUDY TWO • How will you prepare for this appointment? • Who will be the best person to accompany her? • What will you bring with you to the appointment?

47. CASE STUDY THREE John is 70 years old. He lives with his mother who is 93. John has Downs Syndrome and has been coming to the Day Centre for the last 35 years. Over the last year John has become quite forgetful and on some occasions has been found staring into space. It has been noted several times recently that he has been incontinent of urine, which has never happened in the past. John has no memory of being incontinent. Last week whilst out on an activity John suddenly fell to the ground and sustained a severe laceration to his head. He was taken to hospital and treated for his head injury. The doctor was very interested that he had Downs Syndrome and asked if John had ever suffered from epilepsy.

48. CASE STUDY THREE • How do we obtain this information about past health history? • What implications may this have for John? • What questions would you ask, what information is needed?