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Epilepsy in children and young people [QS27]

Measuring the use of this guidance

Statement: 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.

Quality standard measure: Number of children and young people with a recorded seizure type and/or syndrome
What was measured: Percentage of children with epilepsy syndrome classification by one year
Data collection end: January 2014
56%
Number that met the criteria: 678 / 1215
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.

Quality standard measure: Number of children and young people with a recorded seizure type and/or syndrome
What was measured: Percentage of children diagnosed with epilepsy who still had that diagnosis at one year
Data collection end: January 2014
93%
Number that met the criteria: 1200 / 1286
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.

Quality standard measure: Number of children and young people with a recorded seizure type and/or syndrome
What was measured: Percentage of children with epilepsy with seizure classification by one year
Data collection end: January 2014
95%
Number that met the criteria: 1159 / 1215
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.

Quality standard measure: Evidence of local arrangements for children and young people presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
What was measured: The proportion of trusts with at least some level of input from a general paediatric consultant with expertise in epilepsy.
Data collection end: April 2018
95%
Number that met the criteria: 135 / 142
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.

Quality standard measure: Evidence of local arrangements for children and young people presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
What was measured: Proportion of paediatric epilepsy service providers which reported being able to offer a first epilepsy appointment within 2 weeks.
Data collection end: March 2017
17%
Number that met the criteria: 16 / 95
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.

Quality standard measure: Evidence of local arrangements for children and young people presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
What was measured: Proportion of paediatric epilepsy service providers which reported being able to offer a first seizure clinic appointment within 2 weeks.
Data collection end: March 2017
30%
Number that met the criteria: 15 / 50
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.


Statement: 2

Adults having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.

Quality standard measure: Evidence of local arrangements for children and young people having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
What was measured: Proportion of paediatric epilepsy service providers which reported having a waiting time for MRI of 4 weeks or less.
Data collection end: March 2017
40%
Number that met the criteria: 33 / 81
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.

Quality standard measure: Evidence of local arrangements for children and young people having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
What was measured: Proportion of paediatric epilepsy service providers which reported having a waiting time for an EEG of 4 weeks or less.
Data collection end: March 2017
57%
Number that met the criteria: 43 / 76
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.


Statement: 3

Children and young people who meet the criteria for neuroimaging for epilepsy have magnetic resonance imaging

Quality standard measure: Proportion of children and young people who meet the criteria for neuroimaging for epilepsy who have MRI
What was measured: Percentage of children with defined indications for an MRI who had an MRI by one year
Data collection end: January 2014
72%
Number that met the criteria: 544 / 751
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.

Quality standard measure: Evidence of local arrangements for children and young people who meet the criteria for neuroimaging for epilepsy to have MRI.
What was measured: The proportion of trusts that could provide awake MRI for epilepsy investigation.
Data collection end: April 2018
95%
Number that met the criteria: 135 / 142
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.


Statement: 4

Adults with epilepsy have an agreed and comprehensive written epilepsy care plan.

Quality standard measure: Evidence of local arrangements for children and young people with epilepsy to have an agreed and comprehensive written epilepsy care plan.
What was measured: The proportion of trusts that routinely undertook comprehensive care planning for children and young people with epilepsy.
Data collection end: April 2018
78%
Number that met the criteria: 110 / 141
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.


Statement: 5

Children and young people with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

Quality standard measure: Evidence of local arrangements for children and young people with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
What was measured: The proportion of trusts with at least some level of input from an epilepsy specialist nurse.
Data collection end: April 2018
77%
Number that met the criteria: 110 / 142
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.

Quality standard measure: Evidence of local arrangements for children and young people with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
What was measured: Proportion of paediatric epilepsy service providers which reported offering access to a paediatric epilepsy specialist nurse.
Data collection end: March 2017
93%
Number that met the criteria: 84 / 90
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.


Statement: 6

Children and young people with a history of prolonged or repeated seizures have an agreed written emergency care plan.

Quality standard measure: Proportion of children and young people with a history of prolonged or repeated seizures who have an agreed written emergency care plan.
What was measured: Proportion of children and young people who have an emergency care plan.
Data collection end: January 2015
100%
Number that met the criteria: 19 / 19
Area covered: Local
Source: Shahin, A.M. (2015) Audit of epilepsy care in children with epilepsy attending special schools. Developmental Medicine and Child Neurology, Conference (var.pagings): January.


Statement: 7

Children and young people who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral.

Quality standard measure: Evidence of local arrangements for children and young people who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
What was measured: The proportion of trusts with agreed referral pathways to tertiary paediatric neurology services.
Data collection end: April 2018
93%
Number that met the criteria: 132 / 142
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.


Statement: 9

Young people with epilepsy have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.

Quality standard measure: Evidence of local arrangements for young people with epilepsy to have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.
What was measured: Proportion of acute trusts offering transition clinics for young people moving from paediatric services to adult services
Data collection end: September 2015
35%
Number that met the criteria: 28 / 80
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England

Quality standard measure: Evidence of local arrangements for young people with epilepsy to have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.
What was measured: The proportion of trusts that had a joint outpatient service for epilepsy that included the presence of both adult and paediatric professionals.
Data collection end: April 2018
53%
Number that met the criteria: 75 / 142
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.

Quality standard measure: Evidence of local arrangements for young people with epilepsy to have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.
What was measured: Proportion of paediatric epilepsy service providers which reported providing access to a transition clinic.
Data collection end: March 2017
59%
Number that met the criteria: 67 / 113
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.



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