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Epilepsies: diagnosis and management [CG137]

Measuring the use of this guidance

Recommendation: 1.2.2

Adults should receive appropriate information and education about all aspects of epilepsy. This may be best achieved and maintained through structured self-management plans. [2004]

What was measured: Proportion of providers of epilepsy services which offer face-to-face structured self-management education programmes.
Data collection end: March 2017
16%
Number that met the criteria: 21 / 128
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.

What was measured: Proportion of providers of epilepsy services which offer online self-management education programmes.
Data collection end: March 2017
19%
Number that met the criteria: 24 / 128
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.


Recommendation: 1.3.1

Children, young people and adults with epilepsy and their families and/or carers should be given, and have access to sources of, information about (where appropriate): epilepsy in general diagnosis and treatment options medication and side effects seizure type(s), triggers and seizure control management and self-care risk management first aid, safety and injury prevention at home and at school or work psychological issues social security benefits and social services insurance issues education and healthcare at school employment and independent living for adults importance of disclosing epilepsy at work, if relevant (if further information or clarification is needed, voluntary organisations should be contacted) road safety and driving prognosis sudden death in epilepsy (SUDEP) status epilepticus lifestyle, leisure and social issues (including recreational drugs, alcohol, sexual activity and sleep deprivation) family planning and pregnancy voluntary organisations, such as support groups and charitable organisations, and how to contact them

What was measured: Proportion of children with epilepsy and their parents/carers who reported that they were provided with information on lifestyle including water safety
Data collection end: May 2014
70%
Number that met the criteria: 25 / 34
Area covered: Local
Source: Ghazavi MG (2015) Audit of information provided to parents of children with epilepsy. Archives of Disease in Childhood. var.pagings April


Recommendation: 1.3.11

Information on SUDEP should be included in literature on epilepsy to show why preventing seizures is important. Tailored information on the person's relative risk of SUDEP should be part of the counselling checklist for children, young people and adults with epilepsy and their families and/or carers

What was measured: Proportion of children with epilepsy and their parents/carers who reported that they were provided with information on sudden unexpected death in epilepsy (SUDEP)
Data collection end: May 2014
32%
Number that met the criteria: 11 / 34
Area covered: Local
Source: Ghazavi MG (2015) Audit of information provided to parents of children with epilepsy. Archives of Disease in Childhood. var.pagings April

What was measured: Proportion of children and young people who have been informed about risk of SUDEP.
Data collection end: January 2015
5%
Number that met the criteria: 1 / 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.


Recommendation: 1.4.5

It is recommended that all adults having a first seizure should be seen as soon as possible (within 2 weeks) by a specialist in the management of the epilepsies to ensure precise and early diagnosis and initiation of therapy as appropriate to their needs

What was measured: Proportion of adult epilepsy service providers which reported being able to offer a first epilepsy appointment within 2 weeks.
Data collection end: March 2017
8%
Number that met the criteria: 7 / 86
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.

What was measured: Proportion of adult epilepsy service providers which reported being able to offer a first seizure clinic appointment within 2 weeks.
Data collection end: March 2017
23%
Number that met the criteria: 15 / 66
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.


Recommendation: 1.4.6

It is recommended that all children and young people who have had a first non-febrile seizure should be seen as soon as possible by a specialist in the management of the epilepsies to ensure precise and early diagnosis and initiation of therapy as appropriate to their needs. [2004]

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.

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.


Recommendation: 1.5.1

The diagnosis of epilepsy in adults should be established by a specialist medical practitioner with training and expertise in epilepsy

What was measured: Proportion of adult epilepsy service providers which reported employing at least one neurologist with epilepsy as a specialism.
Data collection end: March 2017
91%
Number that met the criteria: 77 / 85
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.


Recommendation: 1.5.2

The diagnosis of epilepsy in children and young people should be established by a specialist paediatrician with training and expertise in epilepsy

What was measured: Proportion of paediatric epilepsy service providers which reported employing one or more paediatricians with epilepsy as a specialism.
Data collection end: March 2017
96%
Number that met the criteria: 99 / 103
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.


Recommendation: 1.6.3

Children, young people and adults requiring an EEG should have the test performed soon after it has been requested (within 4 weeks)

What was measured: The proportion of trusts that could provide standard EEG for epilepsy investigation.
Data collection end: April 2018
59%
Number that met the criteria: 84 / 142
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.

What was measured: Proportion of adult epilepsy service providers which reported having a waiting time for an EEG of 4 weeks or less.
Data collection end: March 2017
18%
Number that met the criteria: 31 / 77
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.

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.


Recommendation: 1.6.20

MRI should be the imaging investigation of choice in children, young people and adults with epilepsy. [2004]

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.


Recommendation: 1.6.22

Children, young people and adults requiring MRI should have the test performed soon (within 4 weeks)

What was measured: Proportion of adult epilepsy service providers which reported having a waiting time for MRI of 4 weeks or less.
Data collection end: March 2017
35%
Number that met the criteria: 30 / 85
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.

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.


Recommendation: 1.6.30

In children and young people, a 12-lead ECG should be considered in cases of diagnostic uncertainty.

What was measured: The proportion of trusts that could provide 12-lead ECG 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.


Recommendation: 1.7.1

Epileptic seizures and epilepsy syndromes in children, young people and adults should be classified using a multi-axial diagnostic scheme. The axes that should be considered are: description of seizure (ictal phenomenology); seizure type; syndrome and aetiology. [2004]

What was measured: Proportion of children and young people who have epilepsy syndrome classification.
Data collection end: January 2015
26%
Number that met the criteria: 5 / 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.

What was measured: Proportion of children and young people who have epilepsy seizure classification.
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.


Recommendation: 1.8.2

All children, young people and adults with epilepsy should have a comprehensive care plan that is agreed between the person, family and/or carers where appropriate, and primary care and secondary care providers. This should include lifestyle issues as well as medical issues

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.

What was measured: Proportion of providers of epilepsy services for adults, children or both which stated they routinely offer care plans to their patients.
Data collection end: March 2017
92%
Number that met the criteria: 126 / 137
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.


Recommendation: 1.8.3

Epilepsy specialist nurses (ESNs) should be an integral part of the network of care of children, young people and adults with epilepsy. The key roles of the ESNs are 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, in the case of children, others involved in the child's education, welfare and well-being.

What was measured: Proportion of adult epilepsy service providers which reported offering access to an adult epilepsy specialist nurse.
Data collection end: March 2017
93%
Number that met the criteria: 81 / 87
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.

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.


Recommendation: 1.8.4

Healthcare professionals have a responsibility to educate others about epilepsy so as to reduce the stigma associated with it. They should provide information about epilepsy to all people who come into contact with children, young people and adults with epilepsy, including school staff, social care professionals and others.

What was measured: The proportion of trusts able to support epilepsy specialist nurse school meetings.
Data collection end: April 2018
71%
Number that met the criteria: 101 / 142
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.


Recommendation: 1.10.1

All children, young people and adults with epilepsy should have access via their specialist to a tertiary service when circumstances require

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.


Recommendation: 1.10.8

The expertise of multidisciplinary teams involved in managing complex epilepsy should include psychology, psychiatry, social work, occupational therapy, counselling, neuroradiology, clinical nurse specialists, neurophysiology, neurology, neurosurgery and neuroanaesthesia. Teams should have MRI and video telemetry facilities available to them.

What was measured: The proportion of trusts that could provide inpatient video telemetry.
Data collection end: April 2018
20%
Number that met the criteria: 29 / 142
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.


Recommendation: 1.12.1

Refer children and young people with epilepsy whose seizures have not responded to appropriate AEDs to a tertiary paediatric epilepsy specialist for consideration of the use of a ketogenic diet.

What was measured: The proportion of trusts that could facilitate the commencement of a ketogenic diet.
Data collection end: April 2018
15%
Number that met the criteria: 22 / 142
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.


Recommendation: 1.13.2

Vagus nerve stimulation is indicated for use as an adjunctive therapy in reducing the frequency of seizures in children and young people who are refractory to antiepileptic medication but who are not suitable for resective surgery. This includes children and young people whose epileptic disorder is dominated by focal seizures (with or without secondary generalisation) or generalised seizures.

What was measured: The proportion of trusts that could provide vagus nerve stimulator insertion.
Data collection end: April 2018
8%
Number that met the criteria: 12 / 142
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.


Recommendation: 1.15.11

In order to enable informed decisions and choice, and to reduce misunderstandings, women and girls with epilepsy and their partners, as appropriate, must be given accurate information and counselling about contraception, conception, pregnancy, caring for children and breastfeeding, and menopause.

What was measured: Proportion of women aged 18 or over and who have not attained the age of 55 who are taking antiepileptic drugs who have a record of information and counselling about contraception, conception and pregnancy in the preceding 12 months.
Data collection end: March 2018
1.3%
Number that met the criteria: 981 / 75007
Area covered: England
Source: Indicators no longer in QOF (INLIQ)


Recommendation: 1.17.5

Multidisciplinary services provided jointly by adult and paediatric specialists have a key role in the care of the young person with epilepsy. This can facilitate the transition from paediatric to adult services and aid in the dissemination of information.

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.

What was measured: Proportion of adult epilepsy service providers which reported providing access to a transition clinic.
Data collection end: March 2017
58%
Number that met the criteria: 69 / 118
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.

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.


Recommendation: 1.20.1

Children, young people and adults with epilepsy should have a regular structured review and be registered with a general medical practice

What was measured: Proportion of providers of epilepsy services for adults, children or both which stated they routinely offer annual reviews.
Data collection end: March 2017
78%
Number that met the criteria: 109 / 139
Area covered: UK
Source: Epilepsy Action. Epilepsy health services in the UK.



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