1. Audit of the NICE Quality standards for the epilepsies in children and young people Holly Evans, Radia Fahami, Nickolas Tilbury Rachael Wheway Hani Faza

2.  Published Feb 2013  9 standards  Define clinical best practice  Provide specific quality statements and measures with definition of high-quality care  Cover diagnosis and Mx of epilepsy  Endorsed by RCPCH, RCGP, ABN, Epilepsy Action and Epilepsy Society NICE Quality Standards for the Epilepsies

3. 1.Children and young people presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation 2.Children and young people having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested 3.Children and young people who meet the criteria for neuroimaging for epilepsy have MR imaging (57%) 4.Children and young people with epilepsy have an agreed and comprehensive written epilepsy care plan NICE Quality Standards for the Epilepsies

4. 5.Children and young people with epilepsy are seen by epilepsy specialist nurse who they can contact between scheduled reviews 6.Children and young people with a history of prolonged or repeated seizures have an agreed written emergency care plan. 7.Children and young people who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral NICE Quality Standards for the Epilepsies

5. 8.Children with epilepsy have a structured review with a paediatric epilepsy specialist at least annually (89%) 9.Young people with epilepsy have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services NICE Quality Standards for the Epilepsies

6.  Audit of 6 quality standards out of 9  2 out 9 standards: part of Epilepsy 12 audit (round 2)  1 out of 9: to be audited in the future AUDIT

7. Children and young people presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation Rationale  Diagnosing epilepsy can be complex  Misdiagnosis occurs in 5–30% of people.  Crucial that specialists involved early in diagnosing epilepsy and that they take great care to establish the correct diagnosis Quality Statement 1 Referral to a Specialist

8. A paediatrician with training and expertise in epilepsy who has for example:  Completed the specialist training module on epilepsy developed by RCPCH, or  Worked for a min of 6 months in a tertiary centre for neurology in children and attended appropriate paediatric epilepsy training courses. The care of the specialist's patients with epilepsy should be part of an ongoing peer review process related to epilepsy care NICE Quality Standards definition Who is a Specialist?

9. Statement 1 Referral to a Specialist Retrospective review of medical notes of 25 Primary care referrals for suspected epilepsy in children who had an EEG between Jan 2013 and Oct 2013:  Time interval between receipt of GP referral and clinic review  Paediatrician performing the review

13. Quality Statement 1 Referral to a specialist and seen in 2 weeks

14.  Paediatricians with expertise in epilepsy are seeing just over 40% of GP referrals for suspected epilepsy  60% of GP referrals for suspected epilepsy are seen within 2 weeks of receipt of referral  Only 28% of all GP referrals are seen by PWEE within 2 weeks Statement 1 Results Summary

15. Statement 1 Recommendation  Changes to clinic booking rules to allow more referrals to be seen by PWEE  ? Separate pathway for GP referrals (not C&B)

16. Children and young people having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested Rationale Anxious time for patients and families The earlier a correct diagnosis of epilepsy is made, the sooner tailored therapy can be initiated Quality Statement 2 Investigations

17.  Audit of every EEG requested and subsequently performed from 01/01/13 to 30/08/13  Data collected: Request date Date performed Type of EEG performed Statement 2 Investigations (EEG)

18.  51 EEGs performed  50 were standard EEGs, 1 was 24 hour ambulatory  42 were performed within 4 weeks of request  The 9 EEGs that were performed more than 4 weeks from request date were all standard EEGs  6 of the 9 that were performed more than 4 weeks from request date were requested in August Statement 2 Results

19. EEG results

20. EEG Results

21. Statement 2 Results Summary  Excellent performance overall  Significant amount of EEGs done on the day of request  Majority of the 4 week+ delays were in July/August  ?busy time for neurophysiology in August

22. Quality Statement 5 Epilepsy Specialist Nurse Children and young people with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews. Definition The role ESN is to support both epilepsy specialists and generalists, to ensure access to community and multi agency services and to provide information, training and support to the child, young person or adult, families, carers and others involved in the child's education, welfare and wellbeing

23. Statement 5 Rationale Epilepsy specialist nurses play a key role in supporting continuity of care between settings for people with epilepsy There is some evidence that ESN improve clinically important outcomes such as knowledge, anxiety and depression for people with epilepsy in secondary and tertiary care

24. Statement 5 Quality Measures a) Proportion of children and young people with epilepsy who have seen a named epilepsy specialist nurse at diagnosis b) Proportion of children and young people with epilepsy who have seen an epilepsy specialist nurse at their review c) Proportion of children and young people with epilepsy who have the contact details of a named epilepsy specialist nurse

25. Method  Patients were identified from an 8 week review of both general and epilepsy clinics  This review yielded a total of 79 children identified as having epilepsy  41 were reviewed in epilepsy clinics and 38 were in general clinics  Data was then obtained from reviewing clinic letters and notes and from a database held by our ESN. Some patients were also contacted by telephone

26. Results Epilepsy clinics General Clinics Totals No of patients with epilepsy41 (52%)38 (48%)79 New diagnosis since Nov 13718 Seen by nurse at diagnosis4 (57%)04 (50%) Seen by nurse at time of review 33 (80%)4 (10.5%)37 (47%) Documentation of nurse presence 17 (41%)1 (2.6%)18 (23%) No. seen in nurse-led epilepsy clinic 325 No. with nurse contact details 40 (97%)24 (63%)64 (81%)

27. Percentage of patients with epilepsy seen in an epilepsy clinic vs a general clinic

28. A) Percentage of patients seen by an epilepsy specialist nurse at time of diagnosis since November 2013.

29. B) Percentage of patients seen by an ESN at review

30. Percentage of Patients seen by an ENS at review in an epilepsy clinic vs a general clinic Epilepsy clinics 41 Patients General clinics 38 Patients

31. C) Percentage of patients across all clinics who have the contact details for the epilepsy specialist nurse

32. Statement 5 Quality Measures Results Summary  A) Proportion of children and young people with epilepsy seen by a named ESN at diagnosis 50%  B) Proportion of children and young people with epilepsy who have seen an epilepsy specialist nurse at their review (since Nov 2013) 47% (23% documented)  C) Proportion of children and young people with epilepsy who have the contact details of a named epilepsy specialist nurse 81%

33.  More epilepsy nurse time to attend reviews, especially at general paediatric clinics.  If patients are attending clinic for their epilepsy, liaise with Epilepsy Nurse regarding her presence at the appointment, where possible.  Better documentation in notes/clinic letters regarding the presence of an ESN at review.  Audit patient/parent satisfaction with access to ESN Statement 5 Recommendations

34. Quality Statement 6 Emergency Care Plan Children and young people with a history of prolonged or repeated seizures have an agreed up- to-date, written emergency care plan

35. Emergency Care Plan Definition  Should describe what happens in event of a prolonged or repeated seizure, including pharmacological treatment that should be given and actions to take, who to contact and when.  Agreed between child or young person with epilepsy, their family/carers if appropriate and their primary and secondary healthcare professionals.  Training is required to initiate treatment at home or in the community  The plan should be reviewed at least annually

36. Method  Patients identified from an 8 wk review of general & epilepsy clinics.  Data obtained from reviewing ESN database which lists all patients who are prescribed midazolam. ESN also has a folder which holds the most up to date emergency plan for each of these children.

37.  79 epilepsy patients were identified. Of these, 24 prescribed rescue medication for prolonged or repeated seizures.  10 patients were reviewed in epilepsy clinics.  14 were seen in general clinics. Statement 6 Results

38. Bar chart to show percentage of patients with prolonged or repeated seizures and an up to date Emergency Plan

39. Quality Statement 6 Results Summary  Children and young people with a history of prolonged or repeated seizures (on rescue medication) have an agreed up to date, written emergency care plan 54%  Only 36% of patients attending general paediatric clinics have an agreed up-to-date emergency care plan (vs 80% in those attending epilepsy clinics).

40. Statement 6 Recommendations  Patients with prolonged or repeated seizures should have an up-to-date emergency plan reviewed and documented at every review.  More epilepsy nurse time is needed to attend reviews and ensure up-to-date emergency care plans.  Audit patient/ parent satisfaction with emergency care plans.

41. Children and young people who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral Rationale Vital for diagnostic uncertainty, specialised advice on drugs, surgery, epilepsy combined with other complicated medical conditions or psychological problems. Timely and appropriate access to tertiary services remains variable across the country Quality Statement 7 Tertiary referral

42. Referral Criteria to tertiary services (NICE Guidelines) Referral should be considered when 1 or more of the following criteria are present: 1.Epilepsy not controlled with AED within 2 yrs of onset 2.Management is unsuccessful after 2 drugs 3.The child is under 2 years of age 4.The child or young person experiences, or is at risk of, unacceptable side effects from medication 5.There is a unilateral structural lesion 6.There is psychological or psychiatric comorbidity 7.Diagnostic doubt as to the nature of seizures or seizure syndrome

43. Statement 7 Method  Epilepsy patients identified from lists of patients attending paediatric clinics between 4 Feb 2014 and 28 Mar 2014  A total of 67 patients identified  37 out 67 are seen by PWEE  26 out of 67 were candidates for tertiary referral  14 out of those candidates were referred or already under review by paediatric neurologist

45. Proportion of epilepsy patients in paediatric clinics

46. Epilepsy patients for tertiary referral

47. Referral to Tertiary Neurology

48. Patients not referred to tertiary  Uncontrolled after 2 meds, behavioural issues (2 seizures in last yr). Not indicated!  Behavioural problems ?ADHD. 1AED. Not indicated!  Autism with learning difficulties. 1AED. Not indicated!  LD + behavioural problems. 1 AED. Not indicated!  <2 yr old.Well controlled on 1 AED. Development-N. Not indicated!

49. Patients not referred to tertiary  CP+ ASD. Not seizure free after 2 yrs and one CBZ only  ASD + LD. Many DNAs. 1 AED -not seizure-free  Not controlled with 2 meds  Younger than 2. 1 AED. 5 months since diagnosis  Learning difficulties. Rt hemi. Well-controlled- 1 AED  severe LD +hypotonia. 1 AED and well controlled  LD+ behavioural problems. Multiple AEDs. Now seizure free on 1

50. Statement 7 Results Summary  Just over 50% of candidates for referral to tertiary neurology have been referred.  There is some debate as to whether those not referred (5 out of 12) needed a referral.  Unable to determine time interval between referral and tertiary neurology clinic in those seen.

51. Statement 7 Recommendation  Audit patient or parent/carer satisfaction with referral to tertiary care specialist.  Keep a record of date of request for a referral and re- audit.

52. Quality Statement 9 Transition Young people with epilepsy have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services Definition of period of transition should be a joint clinical action between paediatric and adult services, with at least 1 meeting at a joint consultation and a clear action plan for conducting a review after the young person has transferred into adult services

53. Statement 9 Transition Rationale  Important for young people managing the physical and mental transition from adolescence to adulthood.  Vital to develop and maintain the self-esteem and confidence of the adolescent with epilepsy.  Provides an important opportunity to review the diagnosis, classification, cause and management of a young person's epilepsy before they enter adulthood.

54. Local Set up for epilepsy transition  Teenage clinic for patients with epilepsy aged 14 years and above (excludes children with neurodisability)  7 teenage clinics a year (3 MAL, 4HNF)- best practice tariff  Adult and paediatric epilepsy nurses present at each clinic

55. Statement 9 Results  Reviewed case notes of children 14 years or over  11 out of 67 are 14 years or older  4 out of 11 neurodisability patients and hence excluded  All remaining 7 teenagers are seen in Teenage clinics

56. Statement 9 Recommendation  Handover clinics with adult neurologist- underway  Audit teenage epilepsy patient experience of transition to adult services

57.  28% patients referred for suspected epilepsy seen by PWEE within 2 weeks  Majority of EEGs are done within 4 weeks of request  50% of epilepsy patients are seen by ESN at their diagnosis and 47% seen by ESN at their review  54% of patients with epilepsy have an agreed up to date, written emergency care plan (36% in general paed, 80% in epilepsy clinics) Summary

58.  More referral to tertiary neurology is needed.  There is a need for a handover clinic with an adult neurologist.  There are areas for improvement highlighted in this audit.  There is a need to re-audit in 2 years following implementation of the proposed recommendations Summary

59. Any questions?