Audit of the NICE Quality standards for
the epilepsies in children and young
people
Holly Evans, Radia Fahami, Nickolas Tilbury
Rachael Wheway
Hani Faza
NICE Quality Standards for the
Epilepsies
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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
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
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
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
AUDIT
 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
Quality Statement 1
Referral to a Specialist
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
Who is a Specialist?
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
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
Time interval between Referral and Clinic
16
60%
Number of patients
14
12
40%
10
8
6
4
2
0
within 2 weeks
>2 weeks
Number of epilepsy patients seen at clinics
6
5
4
3
2
1
0
HMS RPB
JE
DMT JMC WDC GJX VPB HNF IAC MAL
Epilepsy patients seen by
56%
14
12
44%
10
Number of
Patients
8
6
4
2
0
Paediatrician
with
expertise in
Epilepsy
General
paediatrician
Quality Statement 1
Referral to a specialist and seen in 2
weeks
28%
Seen by PWEE
within 2 weeks
Rest
72%
Statement 1
Results Summary
 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
Recommendation
 Changes to clinic booking rules to allow more
referrals to be seen by PWEE
 ? Separate pathway for GP referrals (not C&B)
Quality Statement 2
Investigations
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
Statement 2
Investigations (EEG)
 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
Results
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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
EEG results
EEG Results
Time between date of request and
date of EEG
50
82%
40
Number 30
of
20
Patients
10
18%
0
Within
>4
4 weeks weeks
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
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
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
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
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
Results
Epilepsy
clinics
General
Clinics
Totals
No of patients with epilepsy
41 (52%)
38 (48%)
79
New diagnosis since Nov 13
7
1
8
Seen by nurse at diagnosis
4 (57%)
0
4 (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%)
3
2
5
40 (97%)
24 (63%)
64
(81%)
No. seen in nurse-led
epilepsy clinic
No. with nurse contact
details
Percentage of patients with epilepsy seen in
an epilepsy clinic vs a general clinic
A) Percentage of patients seen by an epilepsy specialist nurse at
time of diagnosis since November 2013.
100%
90%
80%
43%
70%
60%
50%
100%
40%
30%
57%
20%
10%
0%
Diagnosed in
epilepsy clinic
Diagnosed in
general clinic
Not Seen by Nurse
Specialist
Seen by Nurse
Specialist
B) Percentage of patients seen by an ESN
at review
53%
49%
47%
51%
Not seen by nurse
at review
Documented as
seen
Not documented as
seen
Percentage of Patients seen by an ENS at
review in an epilepsy clinic vs a general clinic
Epilepsy clinics 41 Patients
80%
General clinics 38 Patients
25%
52%
90%
10%
75%
48%
20%
Seen by Nurse at review
Documented as seen
Not seen by nurse at
review
C) Percentage of patients across all clinics who have
the contact details for the epilepsy specialist nurse
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%
Statement 5
Recommendations
 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
Quality Statement 6
Emergency Care Plan
Children and young people with a history of
prolonged or repeated seizures have an agreed upto-date, written emergency care plan
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
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.
Statement 6
Results
 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.
Bar chart to show percentage of patients with prolonged or
repeated seizures and an up to date Emergency Plan
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).
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.
Quality Statement 7
Tertiary referral
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
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
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
Clinics attended by epilepsy patients
27%
18
16
22%
14
12
18%
Number of 10
Patients
8
10%
6
4
2
0
MAL
HNF
IAC
JMC WDC RPB VPB
TST
JCS
NR
HMS
JE
DMT
Proportion of epilepsy patients in
paediatric clinics
General Paed
clinic
22%
JMC clinic
(neurodisability)
PWEE-run
clinic
55%
Epilepsy patients for tertiary referral
Yes
39%
No
Referral to Tertiary Neurology
16
Number of epilepsy patients
14
12
10
8
54%
6
46%
4
2
0
Referred
Not referred
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!
Patients not referred to tertiary
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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
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.
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 reaudit.
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
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.
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
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
Statement 9
Recommendation
 Handover clinics with adult neurologist- underway
 Audit teenage epilepsy patient experience of
transition to adult services
Summary
 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
 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
Any questions?