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The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care [CG137]

Measuring the use of this guidance

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 patients reported that they had been provided with general epilepsy information from a health professional
Data collection end: September 2012
44%
Number that met the criteria: 412 / 947
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England

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 people who reported being given information about epilepsy related death
Data collection end: September 2012
13%
Number that met the criteria: 126 / 947
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England

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: 1.3.13

Tailored information and discussion between the child, young person or adult with epilepsy, their family and/or carers (as appropriate) and healthcare professionals should take account of the small but definite risk of SUDEP. [2004]

What was measured: Male patients who had a documented discussion about SUDEP
Data collection end: June 2009
4%
Number that met the criteria: 7 / 175
Area covered: Local
Source: Waddell B et al (2013) Are we discussing SUDEP?–A retrospective case note analysis. Seizure, Vol 22 pp 74-76

What was measured: Patients with age of epilepsy onset <16 years had a documented discussion about SUDEP
Data collection end: June 2009
3%
Number that met the criteria: 4 / 135
Area covered: Local
Source: Waddell B et al (2013) Are we discussing SUDEP?–A retrospective case note analysis. Seizure, Vol 22 pp 74-76

What was measured: Patients with epilepsy for ≥15 years had a documented discussion about SUDEP
Data collection end: June 2009
2.5%
Number that met the criteria: 4 / 163
Area covered: Local
Source: Waddell B et al (2013) Are we discussing SUDEP?–A retrospective case note analysis. Seizure, Vol 22 pp 74-76

What was measured: Patients with at least one tonic-clonic seizure per year had a documented discussion about SUDEP
Data collection end: June 2009
8.6%
Number that met the criteria: 11 / 128
Area covered: Local
Source: Waddell B et al (2013) Are we discussing SUDEP?–A retrospective case note analysis. Seizure, Vol 22 pp 74-76

What was measured: Patients overall had a documented discussion about SUDEP
Data collection end: June 2009
4.1%
Number that met the criteria: 14 / 345
Area covered: Local
Source: Waddell B et al (2013) Are we discussing SUDEP?–A retrospective case note analysis. Seizure, Vol 22 pp 74-76

What was measured: Patients with drug resistant epilepsy had a documented discussion about SUDEP
Data collection end: June 2009
1.5%
Number that met the criteria: 2 / 136
Area covered: Local
Source: Waddell B et al (2013) Are we discussing SUDEP?–A retrospective case note analysis. Seizure, Vol 22 pp 74-76

What was measured: Patients with learning difficulty as well as epilepsy had a documented discussion about SUDEP
Data collection end: June 2009
1.7%
Number that met the criteria: 1 / 60
Area covered: Local
Source: Waddell B et al (2013) Are we discussing SUDEP?–A retrospective case note analysis. Seizure, Vol 22 pp 74-76

What was measured: Patients who were non-compliant with medication had a documented discussion about SUDEP
Data collection end: June 2009
10%
Number that met the criteria: 3 / 29
Area covered: Local
Source: Waddell B et al (2013) Are we discussing SUDEP?–A retrospective case note analysis. Seizure, Vol 22 pp 74-76


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 people (adults and children) diagnosed with epilepsy in the last two years who reported being seen by the appropriate specialist within two weeks
Data collection end: September 2012
7%
Number that met the criteria: 12 / 177
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


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 adults diagnosed in the last two years who reported being diagnosed by an epilepsy specialist clinician
Data collection end: September 2012
20%
Number that met the criteria: 35 / 174
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


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: Proportion of people with epilepsy referred for investigations in the last two years with an average reported waiting times of under four weeks for a standard EEG referral
Data collection end: September 2012
41%
Number that met the criteria: 177 / 436
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


Recommendation: 1.6.7

The EEG should not be used to exclude a diagnosis of epilepsy in a child, young person or adult in whom the clinical presentation supports a diagnosis of a non-epileptic event. [2004]

What was measured: Children who had an EEG where there were no contraindications (i.e. it was appropriate)
Data collection end: May 2011
91.77%
Number that met the criteria: 4538 / 4945
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.


Recommendation: 1.6.20

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

What was measured: Children who had defined indications for an MRI who had MRI by 1 year
Data collection end: May 2011
63.7%
Number that met the criteria: 716 / 1124
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 newly diagnosed (within the last two years) people with epilepsy who reported receiving an MRI scan and received this within four weeks
Data collection end: September 2012
50%
Number that met the criteria: 83 / 165
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


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: Children who had their seizures classified by 1 year
Data collection end: May 2011
86.99%
Number that met the criteria: 1544 / 1775
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.

What was measured: Children who had appropriate epilepsy syndrome classification by 1 year
Data collection end: May 2011
37.18%
Number that met the criteria: 660 / 1775
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.

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: 1.8.1

Children, young people and adults with epilepsy should have an accessible point of contact with specialist services

What was measured: Proportion of acute trusts that provide an epilepsy service, that reported offering their patients access to an adult epilepsy specialist clinician.
Data collection end: September 2012
66%
Number that met the criteria: 52 / 79
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England

What was measured: Proportion of acute and foundation trusts that provide a paediatric epilepsy service and reported offering their patients access to a paediatric epilepsy specialist nurse
Data collection end: September 2012
43%
Number that met the criteria: 21 / 49
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


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: Proportion of people with epilepsy who reported having a written care plan
Data collection end: September 2012
14%
Number that met the criteria: 128 / 947
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England

What was measured: Proportion of acute trusts reporting that their patients with epilepsy are routinely offered care plans
Data collection end: September 2012
47%
Number that met the criteria: 43 / 91
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


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: Children who were referred for input by an epilepsy specialist nurse by 1 year (whole UK)
Data collection end: May 2011
46.14%
Number that met the criteria: 819 / 1775
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.

What was measured: Proportion of adults with epilepsy who reported seeing an epilepsy specialist nurse
Data collection end: September 2012
52%
Number that met the criteria: 475 / 905
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England

What was measured: Proportion of children who are still having seizures who reported seeing an epilepsy specialist nurse
Data collection end: September 2012
58%
Number that met the criteria: 86 / 149
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


Recommendation: 1.9.1.1

Information that is provided about anti-epileptic drugs (AEDs) needs to be in the context of that provided by the manufacturer, for example, indications, side effects and licence status

What was measured: Proportion of patients with epilepsy who reported being given information about their medication and its effects from a health professional
Data collection end: September 2012
50%
Number that met the criteria: 472 / 947
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


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: Proportion of all acute trusts surveyed reported that they do refer to tertiary epilepsy centres
Data collection end: September 2012
95%
Number that met the criteria: 76 / 80
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


Recommendation: 1.10.2

If seizures are not controlled and/or there is diagnostic uncertainty or treatment failure, children, young people and adults should be referred to tertiary services soon for further assessment. Referral should be considered when one or more of the following criteria are present: the epilepsy is not controlled with medication within 2 years management is unsuccessful after two drugs the child is aged under 2 years a child, young person or adult experiences, or is at risk of, unacceptable side effects from medication there is a unilateral structural lesion there is psychological and/or psychiatric co-morbidity there is diagnostic doubt as to the nature of the seizures and/or seizure syndrome. [2004]

What was measured: Proportion of patients (adults and children) with epilepsy who are still having seizures and have reported being referred to a specialist tertiary epilepsy centre
Data collection end: September 2012
27%
Number that met the criteria: 187 / 682
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


Recommendation: 1.15.1.2

Information about contraception, conception, pregnancy, or menopause should be given to women and girls in advance of sexual activity, pregnancy or menopause, and the information should be tailored to their individual needs. This information should also be given, as needed, to people who are closely involved with women and girls with epilepsy. These may include her family and/or carers. [2004]

What was measured: Proportion of women with epilepsy who died during or after pregnancy who received pre-conception counselling.
Data collection end: December 2012
14%
Number that met the criteria: 2 / 14
Area covered: UK
Source: Saving Lives, Improving Mothers’ Care Lessons learned to inform future maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2009-2012


Recommendation: 1.15.1.4

Discuss with women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years), and their parents and/or carers if appropriate, the risk of AEDs causing malformations and possible neurodevelopmental impairments in an unborn child. Assess the risks and benefits of treatment with individual drugs. There are limited data on risks to the unborn child associated with newer drugs. Specifically discuss the risk of continued use of sodium valproate to the unborn child, being aware that higher doses of sodium valproate (more than 800 mg/day) and polytherapy, particularly with sodium valproate, are associated with greater risk. [new 2012]

What was measured: Females aged 12 years or over given regular anti-epileptic drugs who had a documented discussion of pregnancy or contraception
Data collection end: May 2011
37.8%
Number that met the criteria: 56 / 148
Area covered: National
Source: Royal College of Paediatrics and Child Health. Epilepsy12 national report.


Recommendation: 1.17.4

During adolescence a named clinician should assume responsibility for the ongoing management of the young person with epilepsy and ensure smooth transition of care to adult services, and be aware of the need for continuing multi-agency support. [2004]

What was measured: Paediatric neurology centres that had a specific transition service for young people with epilepsy
Data collection end: December 2011
83.33%
Number that met the criteria: 15 / 18
Area covered: National
Source: Iyer A & Appleton R (2013)Transitional services for adolescents with epilepsy in the UK: A survey. Seizure, Vol 22 pp433-437


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 adults still having seizures who reported being offered an epilepsy review
Data collection end: September 2012
68%
Number that met the criteria: 206 / 305
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


Recommendation: 1.20.4

For adults, the maximum interval between reviews should be 1 year but the frequency of review will be determined by the person's epilepsy and their wishes

What was measured: Proportion of adults with epilepsy who reported being offered or took part in an epilepsy review in the last twelve months
Data collection end: September 2012
63%
Number that met the criteria: 597 / 947
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England


Recommendation: 1.20.5

For children and young people, the maximum interval between reviews should be 1 year, but the frequency of reviews should be determined by the child or young person's epilepsy and their wishes and those of the family and/or carers. The interval between reviews should be agreed between the child or young person, their family and/or carers as appropriate, and the specialist, but is likely to be between 3 and 12 months

What was measured: Proportion of children and young people with epilepsy who reported being offered an epilepsy review in the last twelve months
Data collection end: September 2012
70%
Number that met the criteria: 131 / 188
Area covered: England
Source: Epilepsy Action A critical time for epilepsy in England



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