Epilepsy services for Norfolk Juliet Bransgrove Adult Epilepsy Specialist Nurse Dee Elleray

1. Epilepsy services for Norfolk Juliet Bransgrove Adult Epilepsy Specialist Nurse Dee Elleray Bank Epilepsy Specialist Nurse Rebecca Rothwell Student nurse

2. Adult Epilepsy Specialist Nurse (ESN) service June Greenway Norwich Colleen Taylor West Norfolk Dee Elleray Bank ESN Juliet Bransgrove North Norfolk Debbie Davey South Norfolk

3. Kelling hospital BenjaminCourt North Walsham hospital Fakenham Medical Practice Cawston Park hospital Park View Resource Centre Aylsham Health Centre Hoveton & Wroxham Medical Practice Dereham hospital Drayton Medical Practice Coltishall Medical Practice Stalham Green Surgery Queen Elizabeth Hospital & Transition NNUH & Transition Acle Surgery NCH Swaffham Hospital Brundall Surgery Lawson Road Medical Practice Downham Market Attleborough Health Centre Link with West Suffolk Hospital Thetford Healthy Living Centre

4. Norfolk and Norwich University Hospital Queen Elizabeth Hospital Kings Lynn James Paget University Hospital Great Yarmouth West Suffolk Hospital Acute Liaison LD Nurse’s Brain tumour nurse specialist Maternity & Obstetrics VNS pathway Patient Epilepsy Action Social Services LD Teams Employment & Benefits CHC Adult ESN Team Stroke Teams Mental Health Specialist Neurological Rehabilitation Centre

5. True or false?

6. True or false? “Not many people have epilepsy”

7. Prevalence • Epilepsy is the most common serious neurological condition • Around 600,000 people in the UK have a diagnosis of epilepsy, equivalent to 1 in 103 people • Up to 50% of people with moderate to profound LD have epilepsy, and half of these are resistant to treatment with current AEDs • It is not a single condition • There are over 40 different types of epilepsy consisting of at least 29 syndromes Ref: JEC (joint epilepsy council), ‘Epilepsy prevalence, incidence and other statistics’ 2011

8. Prevalence of epilepsy in Norfolk QOF 2016/17 EP001: The contractor establishes and maintains a register of patients aged 18 or over receiving drug treatment for epilepsy

9. True or false? “Anyone can develop epilepsy.”

10. True or false? “Epilepsy is caused by evil spirits”

11. “What causes epilepsy?”

12. Causes of epilepsy • Structural damage to the brain • Malformation during pregnancy • Injury at birth – cerebral palsy • Major head injury • Stroke • Dementia • Brain tumour • Infection of the brain • Meningitis • Encephalitis • Inherited causes • Genetics – Dravets syndrome, tuberose sclerosis, Sturge weber, fragile X, downs syndrome, • Unknown = 40%

13. “What are the triggers for seizures?”

14. What is epilepsy • Epilepsy is the tendency to have recurrent unprovoked seizures caused by a sudden burst of intense electrical activity in the brain

15. Definition • Epilepsy is a disease of the brain defined by any of the following conditions: • At least two unprovoked seizures occurring >24 hours apart • One unprovoked seizure and a 60% probability of further seizures similar to the unprovoked seizures, occurring over the next 10 years • Diagnosis of an epilepsy syndrome Ref: Fisher R, et al, A practical clinical definition of epilepsy. Epilepsia 2014;1-8

16. Epilepsy, seizures and how the brain works • 10 min video showing main types of seizures and what can be done to help • Afterwards, we shall talk about what you’ve seen

17. Percentage of seizures • 60% of people have tonic clonic seizures • 20% simple focal awareness • 12% mixed tonic clonic and focal • 3% complex partial • less than 5% absence seizures, myoclonic seizures and other types • Around 3% of people with epilepsy are photosensitive and have seizures induced by photic stimuli

18. Differentiate between a seizure and behaviour Seizure Behaviour

19. Differentiate between a seizure and behaviour Seizure Behaviour Variation in behaviour with circumstances: Usually slower in onset. Rocking, Temper Tantrums (moods may change), Panic Attacks, Hyperventilation. Commonly precipitant such as demands, needs to avoid a situation: The trigger factor is identifiable, e.g. Anger, heat, posture, overcrowded room. • Identical behaviour on each occasion : the attacks are stereotyped. Loss of awareness • No reason or cause for this episode: Abruptness of onset, usually with no warning. The length of episode may vary.

20. Differentiate between a seizure and behaviour Seizure Behaviour disturbance Responsive to calming, support, removal from stressor: There is no period of confusion or sleepiness after the episode. Recovery is usually quick. The episode can usually be avoided by the person supported and removed from the environment. • Unresponsive to communication, calming: Recovery is usually followed by a period of confusion, and a period of sleepiness/ headache. Length of episode may vary.

21. Differentiate between a seizure and behaviour Seizure Behaviour disturbance Investigations: Analysis of behaviour; ABC Video: may identify specific changes to mood & behaviour. • Investigations: • Analysis of behaviour, no relationship to behaviour and environment found. • Review videos: shows seizure features.

23. Group work

24. First aid for convulsive seizures We are going to break-up into groups Group 1 DURING the seizure (shaking) – what should you do? Group 2 DURING the seizure (shaking) – what shouldn’t you do? Group 3 AFTER the seizure (shaking) has stopped – what should be done?

25. During a seizure what should you do? Look around - makes sure it is safe Protect their head Loosen any tight clothing around their neck Allow the seizure to happen Check the time - If shaking doesn't stop after 5 minutes, dial 999 Look for an epilepsy ID card Stay calm and stay with them Stop people crowding around

26. During a seizure what shouldn’t you do Hold them down Put something in their mouth Move them (unless they are in danger) Give them something to eat or drink Try to bring them around

27. After the seizure has stopped what should you do Check their breathing Put them in recovery position Minimise embarrassment Look for injuries Make a note of what happened Person will NOT usually need to go to hospital

29. Care plans • Known triggers if any • Seizure description • Duration • Recovery time • Recovery description • Action • Safety issues

34. Emergency rescue medication • Currently there are two medications commonly used in the community: • Rectal Diazepam • Buccal Midazolam • They both act on the brain and central nervous system to control seizure activity.

37. Personal stories

38. Ben’s story • 17 years old. Lives at home • Epilepsy for a few years. Takes medication • Still has convulsive seizures, usually when tired • They last about 2 minutes • Ben did not sleep well last night • However, Ben is excited. He has a ‘date’ later on, someone from college • His mum asks him to walk to the shops to get some milk

39. Ben’s story • On the way to the shops, Ben has one of his usual seizures • A stranger sees Ben fall and calls for an ambulance • When it arrives, Ben’s seizure has finished • Ben is sleepy and cannot answer questions • The paramedic is worried about Ben. She doesn’t know why Ben collapsed. • Ben has no ID on him

40. Ben’s story • The paramedic decides the safest option is to take Ben to hospital. • Ben wakes up in a noisy and busy hospital. • In the end, Ben goes home 4 hours later after his mum has been called. • By the time Ben gets home, he has missed his ‘date’.

41. How to change what happened to Ben? • Carrying medical identification (ID) • Paying attention to his triggers (that he was tired) • Declining transportation to hospital

42. Sandra’s story • 70 years old. Lives with husband, in supported living. • Epilepsy since a stroke • Usually gets an ‘aura’ or warning sign before her convulsive seizure • Warning is a rising feeling in stomach • Sandra’s family are coming around for lunch • She is busy cooking. Her husband is reading the newspaper in the kitchen • Sandra gets one of her auras

43. Sandra’s story • Sandra feels under pressure to cook the meal for her family • She ignores the aura and hopes it doesn’t turn into a big seizure • She goes over to the gas cooking hob and stirs some boiling vegetables • Sandra then has a convulsive seizure

44. Sandra’s story • She burns herself on the hob and tips the hot water on herself • The burns are serious and painful • Sandra’s husband calls for an ambulance • She stays in hospital for a few days to make sure the burns are healing

45. How to change what happened to Sandra • Warning signs (aura) • Home safety • Personal care

46. John’s story • 80 years old, lives in a care home. • Dementia and epilepsy • John is found wandering around the home, he cannot be distracted and doesn’t know what he’s doing • He then starts to pluck at his clothing staring vacantly into space, he makes lip smacking movements with his mouth • This lasts for five minutes

47. John’s story • Afterwards he is confused, doesn’t recognise the care staff, and he gets agitated and very tired. It takes John a good few hours to fully recover. • It’s lunch time, John usually sits in the same place • Another resident is sitting in his place • John gets distressed and starts pacing up and down • He stops and stamps his right foot up and down

48. John’s story • Carers try to calm John by giving him reassurance • They find him another place to sit down, with some other residents he is familiar with • John settles, makes a quick recovery and enjoys his lunch

49. What happened to John? • The first description was a complex partial seizure • The second was a behaviour response to a change in his routine and not a seizure • Staff recognising the difference between his seizure and a behaviour response