Epilepsy Awareness Version

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Sylvia Bond
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1 Epilepsy Awareness 2010 Version

2 INTRODUCTIONS - Trainers and Trainees HOUSEKEEPING - Fire, Toilets, Refreshments, Smoking views and opinions. GROUNDRULES - Mobile Phones - Confidentiality - Listen to others and respect their views and opinions.

3 Aim: To raise awareness and achieve a greater understanding of epilepsy

4 Objectives to increase understanding of:- Epilepsy, the causes and who has it Diagnosis and types of seizure First aid management of a seizure Management of epilepsy

5 Definition What is Epilepsy? Epilepsy implies a tendency to have seizures (also known as fits). The term epilepsy can be used after two unprovoked episodes of seizure Epilepsy is due to an altered state of the brain, leading to bursts of excessive electrical activity within it.

6 Definition of a Seizure A total or partial loss of consciousness Abnormal contraction / relaxation of the muscles in the body Abnormal feelings / sensations within the body It can be brief (a few seconds) or longer (2 3 minutes) Most seizures are self-limiting

7 Status Epilepticus Definition- Any seizure lasting for at least 30 minutes OR Repeated seizures (clusters) lasting for a total of 30 minutes or longer, from which the person does not regain consciousness between each seizure. NB -A cluster of seizures where the individual regains consciousness in between would not be defined as Status Epilepticus.

Status Epilepticus If a seizure continues beyond five minutes this usually indicates the need for action: If the individual has a protocol for rescue medication then follow that Or call an ambulance

8 Status Epilepticus If a seizure continues beyond five minutes this usually indicates the need for action: If the individual has a protocol for rescue medication then follow that Or call an ambulance For a prolonged convulsive seizure or cluster of seizures most individuals are prescribed either Buccal Midazolam Rectal Diazepam These are rescue medications given as first aid in the emergency situation (PRN) If they don t stop the prolonged seizure then call an ambulance

9 Who has Epilepsy? Anyone can develop epilepsy, it occurs at all ages, races and social class. Epilepsy most commonly occurs before the age of 20 and after 65. Approximately 456,000 people in the UK have epilepsy or 1 in every 131 people Children under 16 is approximately 42,000, or 1 in every 279 people. (Joint Epilepsy Council 2005)

Severe These figures show us that the more severe the level of

10 Prevalence of Epilepsy in the Learning Disability Population 60% 50% 50% 40% 30% 30% 20% 10% 4% 0% Borderline/ Moderate / Profound Mild Severe These figures show us that the more severe the level of learning disability the higher the incidence of epilepsy as a comorbidity.

11 The Human and Economic Costs of Epilepsy 69,000 people live with unnecessary seizures. 74,000 people take drugs they do not need. 189 million needlessly spent each year. Annually 990 people in England die of epilepsy related causes. Up to 400 of these could be avoidable. But also there are people with a missed diagnosis, they have epilepsy but have been diagnosed with something else.

12 Epilepsy is not... An infectious disease A mental illness A faint A migraine Over breathing Fast heart rate Low blood sugar Alcohol abuse Vertigo A stroke Amnesia Panic attacks Drug abuse Non epileptic attack

13 What Causes Epilepsy? Symptomatic causes Congenital defects (often associated with learning or physical disabilities.) Metabolic disorders (Phenylketonuria) and transient metabolic disorders Brain Injury Tumours and Brain lesions Brain Haemorrhage (stroke / vascular disorders) Degenerative disorders ( Alzheimers disease) Infection ( menningitis, encephalitis)

14 What Causes Epilepsy? Idiopathic causes No known cause (this is the majority of people)

15 Epilepsy Epilepsy is not a single condition; there are about 30 different epileptic syndromes and over 38 different seizure types. One example is Lennox-Gastaut Syndrome.

16 Areas of the brain affected Frontal Controls voluntary movement Parietal Controls involuntary movement & touch Temporal Controls speech, hearing and emotion Occipital Controls vision

17 Function of Lobes Motor Activity Speech & Language Sensation Vision Hearing Co-ordination & Balance

18 Types of Seizure A Generalised seizure is... Abnormal activity affecting most of the brain, therefore all of the body is affected by the seizure. Consciousness will be impaired. A focal seizure (partial) is... Abnormal activity affecting a small part of the brain therefore only a small part is affected by these seizures. Focal seizures can develop into secondary generalised seizures.

19 Types of seizures?

20 Generalised Seizures Absence blank stare, break in speech / conversation, unresponsive, blinking / moving eyes, brief duration. Myoclonic isolated jerking of one or more limbs, may cause falls, brief loss of consciousness, often occurs on walking. Clonic rhythmical jerking of limbs, laboured breathing, cyanosis, incontinence, tongue biting. Tonic stiffening of limbs, cry / shout, usually falls backwards Tonic-clonic combination of clonic and tonic Atonic sudden loss of muscle tone, drop to the floor.

21 Partial Seizures Simple partial seizures Complex partial seizures Secondary generalised seizures also UNCLASSIFIED SEIZURES

22 Simple Partial Seizures Only effect a small region of the brain Person will remain conscious Can lead on to larger seizure Usually sudden onset and very brief Often unexplained feelings / emotions May have altered senses May experience spatial distortion Usually the event is remembered in detail.

23 Complex Partial Seizures A change in consciousness but not unconscious Can wander or interfere with equipment / objects May behave in a strange / Bizarre way which may be out of character

24 Secondary generalised This is when a Partial seizure spreads throughout the brain from it s localised origin and then becomes a generalised seizure as activity is distributed more widely across the brain.

25 Non-epileptic Attack Disorder These attacks arise for reasons other than those which cause epilepsy. They suggest an underlying psychological or emotional problem. The Incidence of NEAD is higher in women NEAD often begins in adolescence or early twenties History of previous trauma or abuse is quite common Antiepileptic drug are unhelpful Support without fuss. See Psychologist for psychotherapy

26 Diagnosis of Epilepsy The First Seizure Can not make a diagnosis of first seizure without witness account. Up to 30% of the population could have one seizure with nothing again. The EEG can not make or refute the diagnosis. Tests help to determine the cause. Antiepileptic drugs are not usually given. More than one Seizure Antiepileptic drugs are probably required The EEG may be helpful when deciding which drug to use.

27 Diagnosis of Epilepsy Neurological assessment - Full medical history Blood test (for metabolic disorders) Skull x-ray EEG (electroencephalogram) CT scan (computerised tomography) MRI scan (magnetic resonance imaging)

28 Diagnosis of Epilepsy Eye witness account an accurate eye witness account is essential to inform good history taking

29 Work in groups. Group Exercise Half list the sort of things you may record in an Eye Witness Account or in records following a seizure The other half list what sort of things could act as Triggers to seizure activity.

30 What is an eye witness account? Aura / warning? Loss of consciousness? Floppiness of body? Limb Jerking which? Stiffness of body? Laboured breathing? Drop to the floor? Cyanosis (going blue)? Shouting / crying out? Eyes open / closed? Tongue biting? Incontinence? Frothing at mouth? Sudden intake of breath? Sudden break in speech? Looking blank? Repetitive behaviour? Bizarre behaviour?

31 TRIGGERS Any known seizure Triggers, some people are more likely to have seizures if exposed to certain conditions, these may include:- Changes to medication dehydration Infection or fever Hyperventilation Excitement Anger Alcohol frustration Poor diet or missed meals Menstruation Not taking medication Constipation Flashing lights / strobe lighting or flickering TV Stress or anxiety Sleep deprivation Intense exercise Being too hot, or too cold, too much sun Head injury

32 Treatment Before the decision to treat the epilepsy is made the following need to be taken into account: How effective is the medication to prevent recurrence? What are the potential risks of recurrent seizures? What are the risks and side effects of the medication? Does the person have the capacity to decide for themselves about their treatment? Seizures Medication

33 Treatment As well as traditional Anti-epileptic drugs (AEDs) there are other options available:... Surgery Vagal Nerve stimulation Ketogenic Diet Homeopathy Acupuncture Aromatherapy (certain oils can be dangerous) Massage

34 Best Interest Decisions When it comes to making decisions about the best treatment for a person they should be as fully involved as possible. If the person lacks the capacity to make decisions about treatment a best interest meeting should be held with all those involved to make a best interest decision. Consideration must be given to whether treatment may constitute a Deprivation of the Persons Liberty as described in the Mental Capacity Act 2005.

35 Role of Staff who Provide Direct Care Need to have received adequate training. Confidence to provide support to a person having a seizure. Recognise when to call for extra help. Accurate and detailed recording of epileptic seizures. Implement agreed plan of care.

36 Staff Role in Medication Be aware of what the anti-epileptic medication is Importance of correct dose at correct time Awareness/knowledge of side effects Be aware of who to report side effects to

37 Treatment and Care (1) Support the person to be involved in decisions around their care. Don t over protect the person - epilepsy is not a disability. Ensure that the person is as healthy as possible with good diet, exercise, regular medical checks. Provide information and education around aspects of their epilepsy. Monitor the persons quality of life e.g. medication side effects, access to leisure activities

38 Treatment and Care (2) Support the person by providing accurate feedback at an outpatient clinic with the doctor. - Seizure frequency and severity - Medication compliance - Any observed side effects - General well being - Use of rescue medication

39 Risk Assessment (1) A risk assessment should be carried out to inform the care plan/risk management plan. Areas of risk likely to need assessment can include:- - Work environment - Leisure activities (swimming, horse riding) - Personal care activities - Household tasks - Use of public transport

40 Risk Assessment (2) The risk assessment should inform the risk management plan to manage/reduce risk by introducing control measures. Risks should be kept in perspective, so a balance should be found between keeping safe and people doing the things that they enjoy.

41 Care plan (1) Each person with a diagnosis should have an individualised care plan which identifies the following:- Type of epilepsy / seizure person has Details of any prescribed treatment Details of any known aura this is the early warning signs which an individual may experience prior to a seizure, may be a strange sensation like taste or feeling or a particular behaviour.

42 Care Plan (2) Any known triggers. (as discussed in group work) Details of any known problems on recovery from seizures e.g. History of respiratory problems. Any other specific information to increase the persons safety during seizures. Details of who is responsible for monitoring / reviewing epilepsy ( GP, Psychiatrist or Neurologist)

43 How to Support a Person in a Seizure (1) Be aware of the type of seizure an individual experiences in advance of any activity Be aware of epilepsy care plans Be aware of the protocol for rescue medication for prolonged seizures Be aware of any identified risks... Atonic seizures Issues linked to recovery Stereotyped behaviours during recovery Falls Risk of status epilepticus

44 How to Support a Person in a Seizure (2) Stay with individual Give reassurance to them throughout Note length of convulsive phase of seizure Ensure safety while individual is unconscious Observe for breathing difficulties Place a support under head/neck if possible Allow space for convulsive part of seizures Do not restrict movement Do not place anything in the mouth If on road try to stop traffic without endangering yourself

45 How to Support a Person in a Seizure (3) It is normal during a convulsive seizure for breathing to be affected and colour to change Only move if in immediate danger - e.g. against hot radiator/fire If in bath keep head above water If in a swimming pool, keep head above water and call lifeguards CLEAR AIRWAY IS VITAL

46 ??????????????????? What would you do if the person in your care was a wheelchair user and they started having a seizure?

47 Recovery (1) Once convulsive phase has stopped, recovery begins Normal breathing should return Colour should return to normal They may remain unconscious for seconds to minutes so Placing the person on their side (recovery position) is vital and then Close observation until fully conscious

48 Recovery (2) Check for any injuries which the person may have sustained during the seizure, if necessary seek medical attention. Observe for any signs of incontinence and support as appropriate.

49 Epilepsy Records (1) In order to ensure accurate review and monitoring of a persons epilepsy all seizure activity should be recorded. Include details of: Length of seizure Description of seizure Any problem encountered Any PRN administered

50 SUDEP Defined Sudden, unexpected death in individuals with epilepsy, Witnessed or unwitnessed Non-traumatic and non-drowning With or without evidence of a seizure Excluding documented Status Epilepticus In which post-mortem examination does not reveal a toxicicological or anatomic cause of death.

51 Reported risk factors for SUDEP include: Young age Generalised tonic-clonic seizures Uncontrolled epilepsy Learning disability Seizures occurring during sleep Unwitnessed seizures and poor adherence to antiepileptic drug regimen

52 UK Epilepsy Resources Epilepsy Action New Anstey House, Gateway Drive, Yeadon, Leeds LS19 7XY Helpline: National Society for Epilepsy Chalfont Centre Chalfont St Peter, Gerrards Cross SL9 0RJ Helpline: Epilepsy Bereaved PO Box 112, Wantage, Oxen OX12 8XT Telephone: Epilepsy Scotland 48 Govan Road, Glasgow GS1 1JL Telephone: Helpline: Epilepsy Wales 15 Chester Street, St Asaph, Denbighshire LL17 0RE Telephone: National Institute for Clinical Excellence

Epilepsy - A General Introduction

Page 1 of 5 Epilepsy - A General Introduction About 1 in 30 people in the UK develop epilepsy at some stage. It most commonly starts in childhood and in people over 60. However, epilepsy can begin at any