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Epilepsy

About

What is covered

This interactive flowchart covers diagnosing and managing the epilepsies in adults and children in primary and secondary care.

Updates

Updates to this interactive flowchart

24 April 2018 Updated MHRA warnings for valproate. Structure revised, and summarised recommendations replaced with full recommendations.
22 January 2015 Information added about strengthened Medicines and Healthcare Products Regulatory Agency warnings on the use of valproate in women of childbearing potential.
5 March 2013 The epilepsies in adults quality standard (QS26) and the epilepsies in children and young people quality standard (QS27) added.

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Short Text

Everything NICE has said on diagnosing and managing the epilepsies in adults and children in primary and secondary care in an interactive flowchart

What is covered

This interactive flowchart covers diagnosing and managing the epilepsies in adults and children in primary and secondary care.

Updates

Updates to this interactive flowchart

24 April 2018 Updated MHRA warnings for valproate. Structure revised, and summarised recommendations replaced with full recommendations.
22 January 2015 Information added about strengthened Medicines and Healthcare Products Regulatory Agency warnings on the use of valproate in women of childbearing potential.
5 March 2013 The epilepsies in adults quality standard (QS26) and the epilepsies in children and young people quality standard (QS27) added.

Sources

NICE guidance and other sources used to create this interactive flowchart.
Epilepsies: diagnosis and management (2012 updated 2018) NICE guideline CG137
Deep brain stimulation for refractory epilepsy (2012) NICE interventional procedures guidance 416
Vagus nerve stimulation for refractory epilepsy in children (2004) NICE interventional procedures guidance 50
Epilepsy in children and young people (2013) NICE quality standard 27
Epilepsy in adults (2013) NICE quality standard 26

Quality standards

Quality statements

Referral to a specialist

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

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, and it has been estimated that misdiagnosis occurs in 5–30% of people. It is therefore crucial that specialists are involved early in diagnosing epilepsy and that they take great care to establish the correct diagnosis.

Quality measure

Structure
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.
Process
a) Proportion of children and young people presenting with a suspected seizure who are seen by a specialist in the diagnosis and management of the epilepsies.
Numerator – the number of people in the denominator who are seen by a specialist in the diagnosis and management of the epilepsies.
Denominator – the number of children and young people presenting with a suspected seizure.
b) Proportion of children and young people presenting with a suspected seizure who are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Numerator – the number of people in the denominator who are seen within 2 weeks of presentation.
Denominator – the number of children and young people presenting with a suspected seizure seen by a specialist in the diagnosis and management of the epilepsies.
Outcome
a) Diagnosis of epilepsy that is subsequently found to be incorrect.
b) Diagnosis of a condition that is subsequently found to be epilepsy.
c) Number of children and young people with a recorded seizure type and/or syndrome.

Description of what the quality statement means for each audience

Service providers ensure systems are in place 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.
Healthcare professionals ensure that 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.
Commissioners ensure they commission services 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.
Children and young people who have a suspected seizure are seen by a doctor with training and expertise in diagnosing and treating epilepsy within 2 weeks.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.4.6 (key priority for implementation), 1.4.1 and 1.4.2.

Data source

Structure
Local data collection.
Process
a) and b) Local data collection.
Outcome
a) Organisations can collect data on the percentage of children where there is evidence that a diagnosis of epilepsy (2 or more epileptic seizures) was made and then later withdrawn at any time during 12 months after first paediatric assessment using section 3.10 of the Epilepsy12 national audit.
b) Local data collection.
c) Organisations can collect data on the diagnosis made by the paediatric team by the end of the 12 months after first paediatric assessment using section 3.9 of the Epilepsy12 national audit.

Definitions

A suspected epileptic seizure is a reported acute episode of altered functioning, presumed to be the direct result of a change in electrical activity in the brain, the nature of which raises concerns that a seizure has occurred.
A specialist in the diagnosis and management of the epilepsies in children and young people is a paediatrician with training and expertise in epilepsy who has, for example, completed the specialist training module on epilepsy developed by the Royal College of Paediatrics and Child Health, or worked for a minimum 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.

Investigations

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Children and young people having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.

Rationale

The period between the suspected seizure occurring and diagnosis can be a particularly anxious time for patients and families and it is therefore important that investigations are conducted in a timely manner. The earlier a correct diagnosis of epilepsy is made, the sooner tailored therapy can be initiated. Delays caused by a lack of available diagnostic equipment can lead to distress and impact negatively on the everyday lives of patients.

Quality measure

Structure
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.
Process
Proportion of children and young people having initial investigations for epilepsy who undergo the tests within 4 weeks of them being requested.
Numerator – the number of people in the denominator who undergo the tests within 4 weeks of the request.
Denominator – the number of children and young people having initial investigations for epilepsy.
Outcome
Patient or parent/carer satisfaction with the length of time between tests being arranged and the tests being performed.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for children and young people having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
Healthcare professionals ensure that children and young people having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.
Commissioners ensure they commission services for children and young people having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
Children and young people having their first tests for epilepsy have the tests within 4 weeks of them being requested by the doctor.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.6.3 and 1.6.22.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
Local data collection.

Definitions

Initial investigations for epilepsy include electroencephalogram (EEG) and magnetic resonance imaging, as appropriate.
Tests such as long-term video or ambulatory EEG, which might be used in the assessment of children and young people in whom there are difficulties with diagnosis after clinical assessment and standard EEG, might not be possible within this timeframe.
Test results should be interpreted by practitioners who have the necessary competencies.
Information should be provided to children and young people, and their families and/or carers as appropriate, on the reasons for the tests, their results and meaning, the requirements of specific investigations, and the logistics of obtaining them.

Equality and diversity considerations

Very young children, or children and young people with learning disabilities or challenging behaviour, might need particular care and attention to help them tolerate investigations. The same services and investigations should be offered to children and young people with learning disabilities as are offered to the general population.

Magnetic resonance imaging

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

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

Rationale

Magnetic resonance imaging (MRI) is shown by evidence to be the most sensitive and specific neuroimaging option in terms of identifying structural abnormalities in the brain, but access to MRI scanning and reporting facilities varies across the country.

Quality measure

Structure
a) Evidence of local arrangements for children and young people who meet the criteria for neuroimaging for epilepsy to have MRI.
b) Evidence of local arrangements for children and young people with learning disabilities who meet the criteria for neuroimaging for epilepsy to have MRI.
Process
Proportion of children and young people who meet the criteria for neuroimaging for epilepsy who have MRI.
Numerator – the number of people in the denominator who have MRI.
Denominator – the number of children and young people who meet the criteria for neuroimaging for epilepsy.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for children and young people who meet the criteria for neuroimaging for epilepsy to have MRI.
Healthcare professionals ensure that children and young people who meet the criteria for neuroimaging for epilepsy have MRI.
Commissioners ensure they commission services for children and young people who meet the criteria for neuroimaging for epilepsy to have MRI.
Children and young people who are having neuroimaging (taking pictures of the brain) for epilepsy have magnetic resonance imaging (a type of neuroimaging that uses magnetic fields to produce a picture of the brain; often shortened to MRI).

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.6.20.

Data source

Structure
a) and b) Local data collection.
Process
Local data collection. Organisations can collect data on the percentage of children with defined indications for MRI who had MRI within 1 year using section 9a of the Epilepsy12 national audit.

Definitions

Neuroimaging should be used to identify structural abnormalities that cause certain epilepsies. People diagnosed with idiopathic generalised epilepsy or benign epilepsy with centrotemporal spikes are unlikely to have any aetiologically relevant structural abnormalities and should not therefore undergo neuroimaging.
The criteria for MRI in children and young people are newly diagnosed epilepsy in a child aged under 2 years, epilepsy with focal onset (unless there is evidence of benign epilepsy with centrotemporal spikes) and failure of first-line medication.
In acute situations computed tomography may be used to determine whether a seizure has been caused by an acute neurological lesion or illness. Computed tomography should be used for children and young people for whom a general anaesthetic or sedation would be needed for MRI but would not be needed for computed tomography.

Equality and diversity considerations

The same services, investigations and therapies should be offered to children and young people with learning disabilities or challenging behaviour as are offered to the general population.
Children and young people with learning disabilities or challenging behaviour might need particular care and attention to help them tolerate investigations. Reasonable adjustments, such as offering open-bed scanners, sedation or general anaesthesia, should be made if necessary to ensure all children and young people who need MRI have access to it.
Good communication and a supportive environment are important in helping children to undergo investigative tests. Play therapy may also have a role in supporting children having neuroimaging for epilepsy.

Epilepsy care plan

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Children and young people with epilepsy have an agreed and comprehensive written epilepsy care plan.

Rationale

There are a number of potential lifestyle, health and wellbeing implications directly related to epilepsy. A care plan is an important tool in ensuring that all aspects of a person's life that could be affected by their epilepsy syndrome and the treatment they are receiving are considered and addressed.

Quality measure

Structure
Evidence of local arrangements for children and young people with epilepsy to have an agreed and comprehensive written epilepsy care plan.
Process
a) Proportion of children and young people with epilepsy who have an agreed and comprehensive written epilepsy care plan.
Numerator – the number of people in the denominator who have an agreed and comprehensive written epilepsy care plan.
Denominator – the number of children and young people with epilepsy.
b) Proportion of children and young people with an epilepsy care plan, or their parents or carers who feel they have been involved in developing and agreeing their plan.
Numerator – the number of people in the denominator, or their parents or carers, who feel they have been involved in developing and agreeing their plan.
Denominator – the number of children and young people with an epilepsy care plan.
Outcome
a) Patient or parent/carer satisfaction with involvement in the epilepsy care planning process.
b) Parent/carer satisfaction with involvement in the epilepsy care planning process.

Description of what the quality statement means for each audience

Service providers ensure that systems are in place for children and young people with epilepsy to have an agreed and comprehensive written epilepsy care plan.
Healthcare professionals ensure that children and young people with epilepsy have an agreed and comprehensive written epilepsy care plan.
Commissioners ensure they commission services for children and young people with epilepsy to have an agreed and comprehensive written epilepsy care plan.
Children and young people with epilepsy or carers have a written epilepsy care plan that includes details about treatment and any preferences and lifestyle issues, and is agreed between them (and their parents or carers if appropriate) and their healthcare team.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.3.1 and 1.8.2.

Data source

Structure
Local data collection.
Process
a) and b) Local data collection.
Outcome
a) and b) Local data collection.

Definitions

The comprehensive epilepsy care plan should be a written record of the decisions made about the child's or young person's past, present and future care.
It should be discussed and agreed between the child or young person with epilepsy, their parents and/or carers and their primary and secondary health and social care professionals. A local template or checklist should be developed to ensure consistency in the content of each epilepsy care plan based on NICE clinical guideline 137 recommendation 1.3.1. The plan should be reviewed on at least annually.
The care plan should include any issues relating to the following topics (as listed in NICE clinical guideline 137 recommendation 1.3.1):
  • epilepsy in general
  • the child's or young person's specific epilepsy syndrome
  • 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 college
  • importance of disclosing epilepsy in college or at work, if relevant (if further information or clarification is needed, voluntary organisations should be contacted)
  • road safety and driving
  • prognosis
  • sudden unexpected death in epilepsy (SUDEP; sudden, unexplained, witnessed or unwitnessed, non-traumatic and non-drowning death in people with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death)
  • 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.

Equality and diversity considerations

Consideration should be given to the capacity of someone with epilepsy to be involved in agreeing their epilepsy care plan. Best interest decision making, in accordance with the Mental Capacity Act, should be adhered to.

Epilepsy specialist nurse

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

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

Rationale

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

Quality measure

Structure
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.
Process
a) Proportion of children and young people with epilepsy who have seen a named epilepsy specialist nurse at diagnosis.
Numerator – the number of people in the denominator who have seen an epilepsy specialist nurse at diagnosis.
Denominator – the number of children and young people with epilepsy.
b) Proportion of children and young people with epilepsy who have seen an epilepsy specialist nurse at their review.
Numerator – the number of people in the denominator who have seen an epilepsy specialist nurse at their review.
Denominator – the number of children and young people with epilepsy.
c) Proportion of children and young people with epilepsy who have the contact details of a named epilepsy specialist nurse.
Numerator – the number of children and young people in the denominator who have the contact details of a named epilepsy specialist nurse.
Denominator – the number of children and young people with epilepsy.
Outcome
Patient or parent/carer satisfaction with access to epilepsy specialist nursing.

Description of what the quality statement means for each audience

Service providers ensure that systems are in place for children and young people with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Health and social care professionals ensure that children and young people with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Commissioners ensure they commission services for children and young people with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Children and young people with epilepsy see an epilepsy specialist nurse (a nurse who has training and experience in caring for people with epilepsy) who they or their parent/carer can contact between scheduled reviews.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.8.3.

Data source

Structure
Local data collection.
Process
a), b) and c) Local data collection. Organisations can collect data on the percentage of children with evidence of input by, or referral to, an epilepsy specialist nurse within 1 year using section 2 of the Epilepsy12 national audit.
Outcome
Local data collection.

Definitions

The role of the epilepsy specialist nurse is described in NICE clinical guideline 137 recommendation 1.8.3 as: 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 wellbeing.
Epilepsy specialist nursing may be provided in a number of different teams, for example the learning disabilities team.
At diagnosis in this context means within 3 months of the epilepsy diagnosis being confirmed.

Prolonged or repeated seizures

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

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

Rationale

An emergency care plan is an important tool in improving the quality of emergency care in the community. It ensures that previous incidents and the agreed treatment strategies are taken into account by healthcare professionals. It also provides guidance for family members or carers who may need to administer emergency treatment. The timely and appropriate management of a prolonged or repeated seizure may significantly reduce the risk of mortality and morbidity (long-term complications) known to be associated with prolonged or repeated seizures.

Quality measure

Structure
Evidence of local arrangements for children and young people with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Process
Proportion of children and young people with a history of prolonged or repeated seizures who have an agreed written emergency care plan.
Numerator – the number of people in the denominator who have an agreed written emergency care plan.
Denominator – the number of children and young people with a history of prolonged or repeated seizures.
Outcome
a) Accident and emergency attendances for prolonged or repeated seizures.
b) Hospital admissions for prolonged or repeated seizures.
c) Patient or parent/carer satisfaction with emergency care for prolonged or repeated seizures.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for children and young people with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Healthcare professionals ensure that children and young people with a history of prolonged or repeated seizures have an agreed written emergency care plan.
Commissioners ensure they commission services for children and young people with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Children and young people who have had a prolonged seizure (a seizure that lasted 5 minutes or longer) or repeated seizures (3 or more seizures within 1 hour) have a written emergency care plan agreed between them, their parents or carers and their healthcare team that sets out how they should be cared for if they have prolonged or repeated seizures again.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.14.1.4.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
a) Hospital episode statistics contain the data necessary for the monitoring of accident and emergency attendances.
b) and c) Local data collection.

Definitions

An agreed written emergency care plan should describe what happens in the event of a prolonged or repeated seizure, including pharmacological treatment that should be given and actions to take, who to contact and when. It should be agreed between the child or young person with epilepsy, their family and/or carers if appropriate and their primary and secondary healthcare professionals. Family members and/or carers of children and young people with epilepsy will need training to initiate treatment at home or in the community when necessary. The plan should be reviewed at least annually.
Prolonged seizures are seizures that last 5 minutes or more.
Repeated seizures are seizures that occur 3 times or more within 1 hour.
Any child or young person with epilepsy who has experienced a prolonged or repeated seizure is considered to have a history of prolonged or repeated seizures.

Referral to tertiary care

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

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

Rationale

Tertiary referrals can be vital for a number of reasons such as 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 measure

Structure
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.
Process
Proportion of children and young people who meet the criteria for referral to a tertiary care specialist who are seen within 4 weeks of referral.
Numerator – the number of people in the denominator who are seen within 4 weeks of referral.
Denominator – the number of children and young people who meet the criteria for referral to a tertiary care specialist.
Outcome
Patient or parent/carer satisfaction with referral to tertiary care specialist.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for children and young people who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
Healthcare professionals ensure that children and young people who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral.
Commissioners ensure they commission services for children and young people who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
Children and young people who meet the criteria for referral to a tertiary care specialist (someone who works as part of a specialist centre with a team of healthcare professionals experienced in assessing epilepsy that is hard to treat or complicated) are seen within 4 weeks of referral.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.10.2.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
Local data collection.

Definitions

NICE clinical guideline 137 recommends that referral to tertiary services should be considered when 1 or more of the following criteria are present:
  • The epilepsy is not controlled with medication within 2 years of onset.
  • Management is unsuccessful after 2 drugs.
  • The child is under 2 years of age.
  • The child or young person experiences, or is at risk of, unacceptable side effects from medication.
  • There is a unilateral structural lesion.
  • There is psychological or psychiatric comorbidity.
  • There is diagnostic doubt as to the nature of the seizures or the seizure syndrome.
A tertiary care specialist in epilepsy is an adult or paediatric neurologist who devotes the majority of their working time to epilepsy, is working in a multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources, and is subject to regular peer review.

Review

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Children and young people with epilepsy have a structured review with a paediatric epilepsy specialist at least annually.

Rationale

Reviews are important in ensuring that ongoing interventions are effective in meeting the needs of children and young people and to identify any changes in how their epilepsy is being controlled. They also ensure that epilepsy care plans remain relevant and up-to-date.

Quality measure

Structure
Evidence of local arrangements for children and young people with epilepsy to have a structured review with a paediatric epilepsy specialist at least annually.
Process
Proportion of children and young people with epilepsy whose most recent structured review with a paediatric epilepsy specialist was no later than 1 year (or individually agreed interval) after their previous review.
Numerator – the number of people in the denominator whose most recent structured review with a paediatric epilepsy specialist was no later than 1 year (or individually agreed interval) after their previous review.
Denominator – the number of children and young people with epilepsy.
Outcome
a) Patient or parent/carer satisfaction with review content.
b) Patient or parent/carer satisfaction with the frequency of the review.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for children and young people with epilepsy to have a structured review with a paediatric epilepsy specialist at least annually.
Health and social care professionals ensure that children and young people with epilepsy have a structured review with a paediatric epilepsy specialist at least annually.
Commissioners ensure they commission services for children and young people with epilepsy to have a structured review with a paediatric epilepsy specialist at least annually.
Children and young people with epilepsy meet with a paediatric epilepsy specialist (a doctor who treats and cares for children and who has also had special training in diagnosing and treating epilepsy) at least once every year to talk about their treatment and any other problems they might be having with their epilepsy.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.20.3 and 1.20.5.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
a) and b) Local data collection.

Definitions

A structured review should cover all aspects of the child's or young person's epilepsy care plan. The physical, psychological and social needs of children and young people with epilepsy should always be considered by healthcare professionals. Attention should be paid to their relationships with family and friends, and at school.
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's or young person's epilepsy, their wishes and the wishes of their 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 paediatric epilepsy specialist, but is likely to be between 3 and 12 months.
A paediatric epilepsy specialist in the management of the epilepsies is a paediatrician with training and expertise in epilepsy who has, for example, completed the specialist training module on epilepsy developed by the Royal College of Paediatrics and Child Health or worked for a minimum of 6 months in a tertiary centre for epilepsy 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.

Transition from children's to adult services

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

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

Rationale

The need for continuity of care during transition from paediatric to adult services is particularly important for young people managing the physical and mental transition from adolescence to adulthood. Good management of this transition period by healthcare professionals is vital to develop and maintain the self-esteem and confidence of the adolescent with epilepsy. It also provides an important opportunity to review the diagnosis, classification, cause and management of a young person's epilepsy before they enter adulthood.

Quality measure

Structure
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.
Process
Proportion of young people with epilepsy who are being discharged from paediatric epilepsy services who had an agreed transition period between paediatric and adult services.
Numerator – the number of people in the denominator who had an agreed transition period between paediatric and adult services.
Denominator – the number of young people with epilepsy who are no longer being cared for by paediatric services.
Outcome
Young people's experience of transition to adult services.

Description of what the quality statement means for each audience

Service providers ensure systems are in place 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.
Healthcare professionals ensure young people with epilepsy have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.
Commissioners ensure they commission services 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.
Young people with epilepsy who are changing over from children's to adult healthcare services have a period of time when they are supported by both children's and adult services so that the changeover is handled smoothly.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.17.5.

Data source

Structure
Local data collection.
Process
a) and b) Local data collection.
Outcome
Local data collection.

Definitions

The purpose of the joint review is to optimise care and treatment for young people with epilepsy and help their move into adult services.
The period of transition should be a joint clinical action between paediatric and adults 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.

Equality and diversity considerations

People with learning disabilities might need a longer transition period to accommodate the additional complexity of their clinical and psychological needs. In addition, people with learning disabilities might remain in paediatric services for longer than those without learning disabilities, depending on their personal preferences, ability to manage their own condition and clinical needs.

Referral to a specialist

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults 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, and it has been estimated that misdiagnosis occurs in 5–30% of people. It is therefore crucial that specialists are involved early in diagnosing epilepsy and that they take great care to establish the correct diagnosis.

Quality measure

Structure
Evidence of local arrangements for adults presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Process
a) Proportion of adults presenting with a suspected seizure who are seen by a specialist in the diagnosis and management of the epilepsies.
Numerator – the number of people in the denominator who are seen by a specialist in the diagnosis and management of the epilepsies.
Denominator – the number of adults presenting with a suspected seizure.
b) Proportion of adults presenting with a suspected seizure who are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Numerator – the number of people in the denominator who are seen within 2 weeks of presentation.
Denominator – the number of adults presenting with a suspected seizure seen by a specialist in the diagnosis and management of the epilepsies.
Outcome
a) Diagnosis of epilepsy that is subsequently found to be incorrect.
b) Diagnosis of a condition that is subsequently found to be epilepsy.
c) Number of adults with a recorded seizure type and/or syndrome.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Healthcare professionals ensure that adults presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Commissioners ensure they commission services for adults presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Adults who have a suspected seizure are seen by a doctor with training and expertise in diagnosing and treating epilepsy within 2 weeks.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.4.5 (key priority for implementation), 1.4.1 and 1.4.2.

Data source

Structure
Local data collection.
Process
a) and b) Local data collection.
Outcome
a), b) and c) Local data collection.

Definitions

A suspected epileptic seizure is a reported acute episode of altered functioning, presumed to be the direct result of a change in electrical activity in the brain, the nature of which raises concerns that a seizure has occurred.
A specialist in the diagnosis and management of the epilepsies is a medical practitioner (a consultant neurologist or consultant with epilepsy expertise), who has epilepsy as a significant part of their workload (at least the equivalent of 1 session a week) with training and continuing education in epilepsy, usually working as part of a specialist epilepsy team.

Investigations

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

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

Rationale

The period between the suspected seizure occurring and diagnosis can be a particularly anxious time for patients and families and it is therefore important that investigations are conducted in a timely manner. The earlier a correct diagnosis of epilepsy is made, the sooner tailored therapy can be initiated. Delays caused by a lack of available diagnostic equipment can lead to distress and impact negatively on the everyday lives of patients.

Quality measure

Structure
Evidence of local arrangements for adults having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
Process
Proportion of adults having initial investigations for epilepsy who undergo the tests within 4 weeks of them being requested.
Numerator – the number of people in the denominator who undergo the tests within 4 weeks of the request.
Denominator – the number of adults having initial investigations for epilepsy.
Outcome
Patient satisfaction with the length of time between tests being arranged and the tests being performed.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
Healthcare professionals ensure that adults having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.
Commissioners ensure they commission services for adults having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
Adults having their first tests for epilepsy have the tests within 4 weeks of them being requested by the doctor.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.6.3 and 1.6.22.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
Local data collection.

Definitions

Initial investigations for epilepsy include electroencephalogram (EEG) and magnetic resonance imaging, as appropriate.
Tests such as long-term video or ambulatory EEG, which might be used in the assessment of adults in whom there are difficulties with diagnosis after clinical assessment and standard EEG, might not be possible within this timeframe.
Test results should be interpreted by practitioners who have the necessary competencies.
Information should be provided to adults and families and/or carers as appropriate on the reasons for the tests, their results and meaning, the requirements of specific investigations, and the logistics of obtaining them.

Equality and diversity considerations

Adults with learning disabilities or challenging behaviour might need particular care and attention to help them tolerate investigations. The same services and investigations should be offered to adults with learning disabilities as are offered to the general population.

Magnetic resonance imaging

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults who meet the criteria for neuroimaging for epilepsy have magnetic resonance imaging.

Rationale

Magnetic resonance imaging (MRI) is shown by evidence to be the most sensitive and specific neuroimaging option in terms of identifying structural abnormalities in the brain, but access to MRI scanning and reporting facilities varies across the country.

Quality measure

Structure
a) Evidence of local arrangements for adults who meet the criteria for neuroimaging for epilepsy to have MRI.
b) Evidence of local arrangements for adults with learning disabilities who meet the criteria for neuroimaging for epilepsy to have MRI.
Process
Proportion of adults who meet the criteria for neuroimaging for epilepsy who have MRI.
Numerator – the number of people in the denominator who have MRI.
Denominator – the number of adults who meet the criteria for neuroimaging for epilepsy.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults who meet the criteria for neuroimaging for epilepsy to have MRI.
Healthcare professionals ensure that adults who meet the criteria for neuroimaging for epilepsy to have MRI.
Commissioners ensure they commission services for adults who meet the criteria for neuroimaging for epilepsy to have MRI.
Adults who are having neuroimaging (taking pictures of the brain) for epilepsy have magnetic resonance imaging (a type of neuroimaging that uses magnetic fields to produce a picture of the brain; often shortened to MRI).

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.6.20.

Data source

Structure
a) and b) Local data collection.
Process
Local data collection.

Definitions

Neuroimaging should be used to identify structural abnormalities that cause certain epilepsies. People diagnosed with idiopathic generalised epilepsy are unlikely to have any aetiologically relevant structural abnormalities and should not therefore undergo neuroimaging.
The criteria for MRI in adults are new-onset epilepsy or failure of first-line medication, unless there is a clear diagnosis of idiopathic generalised epilepsy.
In acute situations computed tomography may be used to determine whether a seizure has been caused by an acute neurological lesion or illness.

Equality and diversity considerations

The same services, investigations and therapies should be offered to adults with learning disabilities or challenging behaviour as are offered to the general population.
Adults with learning disabilities or challenging behaviour might need particular care and attention to help them tolerate investigations. Reasonable adjustment, such as offering open-bed scanners, sedation or general anaesthesia should be made if necessary to ensure all people who need MRI have access to it.

Epilepsy care plan

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

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

Rationale

There are a number of potential lifestyle, health and wellbeing implications directly related to epilepsy. A care plan is an important tool in ensuring that all aspects of a person's life that could be affected by their epilepsy syndrome and the treatment they are receiving are considered and addressed.

Quality measure

Structure
Evidence of local arrangements for adults with epilepsy to have an agreed and comprehensive, written epilepsy care plan.
Process
a) Proportion of adults with epilepsy who have an agreed and comprehensive written epilepsy care plan.
Numerator – the number of people in the denominator who have an agreed and comprehensive written epilepsy care plan.
Denominator – the number of adults with epilepsy.
b) Proportion of adults with an epilepsy care plan who feel they have been involved in developing and agreeing their plan.
Numerator – the number of people in the denominator who feel they have been involved in developing and agreeing their plan.
Denominator – the number of adults with an epilepsy care plan.
Outcome
Patient satisfaction with involvement in the epilepsy care planning process.

Description of what the quality statement means for each audience

Service providers ensure that systems are in place for adults with epilepsy to have an agreed and comprehensive written epilepsy care plan.
Healthcare professionals ensure that adults with epilepsy have an agreed and comprehensive written epilepsy care plan.
Commissioners ensure they commission services for adults with epilepsy to have an agreed and comprehensive written epilepsy care plan.
Adults with epilepsy have a written epilepsy care plan that includes details about treatment and any preferences and lifestyle issues and is agreed between them and their healthcare team.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.3.1 and 1.8.2.

Data source

Structure
Local data collection.
Process
a) and b) Local data collection.
Outcome
Local data collection.

Definitions

The comprehensive epilepsy care plan should be a written record of the decisions made about the person's past, present and future care.
It should be discussed and agreed between the adult with epilepsy, their family and/or carers if appropriate and their primary and secondary health and social care professionals. A local template or checklist should be developed to ensure consistency in the content of each epilepsy care plan based on NICE clinical guideline 137 recommendation 1.3.1. The plan should be reviewed on at least annually.
The care plan should include any issues relating to the following topics (as listed in NICE clinical guideline 137 recommendation 1.3.1):
  • epilepsy in general
  • the person's specific epilepsy syndrome
  • 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 college or work
  • psychological issues
  • social security benefits and social services
  • insurance issues
  • education and healthcare at college
  • employment and independent living for adults
  • importance of disclosing epilepsy in college or at work, if relevant (if further information or clarification is needed, voluntary organisations should be contacted)
  • road safety and driving
  • prognosis
  • sudden unexpected death in epilepsy (SUDEP; sudden, unexplained, witnessed or unwitnessed, non-traumatic and non-drowning death in people with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death)
  • 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.

Equality and diversity considerations

Consideration should be given to the capacity of someone with epilepsy to be involved in agreeing their epilepsy care plan. Best interest decision making, in accordance with the Mental Capacity Act, should be adhered to.

Epilepsy specialist nurse

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

Rationale

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

Quality measure

Structure
Evidence of local arrangements for adults with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Process
a) Proportion of adults with epilepsy who have seen a named epilepsy specialist nurse at diagnosis.
Numerator – the number of adults in the denominator who have seen an epilepsy specialist nurse at diagnosis.
Denominator – the number of adults with epilepsy.
b) Proportion of adults with epilepsy who have seen an epilepsy specialist nurse at their review.
Numerator – the number of people in the denominator who have seen an epilepsy specialist nurse at their review.
Denominator – the number of adults with epilepsy.
c) Proportion of adults with epilepsy who have the contact details of a named epilepsy specialist nurse.
Numerator – the number of adults in the denominator who have the contact details of a named epilepsy specialist nurse.
Denominator – the number of adults with epilepsy.
Outcome
Patient satisfaction with access to epilepsy specialist nursing.

Description of what the quality statement means for each audience

Service providers ensure that systems are in place for adults with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Healthcare professionals ensure that adults with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Commissioners ensure they commission services for adults with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Adults with epilepsy see an epilepsy specialist nurse (a nurse who has training and experience in caring for people with epilepsy) who they can contact between scheduled reviews.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.8.3.

Data source

Structure
Local data collection.
Process
a), b) and c) Local data collection.
Outcome
Local data collection.

Definitions

The role of the epilepsy specialist nurse is described in NICE clinical guideline 137 recommendation 1.8.3 as: 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 adult, and their families or carers where appropriate.
Epilepsy specialist nursing may be provided in a number of different teams, for example the learning disabilities team.
At diagnosis in this context means within 3 months of the epilepsy diagnosis being confirmed.

Prolonged or repeated seizures

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults with a history of prolonged or repeated seizures have an agreed written emergency care plan.

Rationale

An emergency care plan is an important tool in improving the quality of emergency care in the community. It ensures that previous incidents and the agreed treatment strategies are taken into account by healthcare professionals. It also provides guidance for family members or carers who may need to administer emergency treatment. The timely and appropriate management of a prolonged or repeated seizure may significantly reduce the risk of mortality and morbidity (long-term complications) known to be associated with prolonged or repeated seizures.

Quality measure

Structure
Evidence of local arrangements for adults with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Process
Proportion of adults with a history of prolonged or repeated seizures who have an agreed written emergency care plan.
Numerator – the number of people in the denominator who have an agreed written emergency care plan.
Denominator – the number of adults with a history of prolonged or repeated seizures.
Outcome
a) Accident and emergency attendances for prolonged or repeated seizures.
b) Hospital admissions for prolonged or repeated seizures.
c) Patient satisfaction with emergency care for prolonged or repeated seizures.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Healthcare professionals ensure that adults with a history of prolonged or repeated seizures have an agreed written emergency care plan.
Commissioners ensure they commission services for adults with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Adults who have had a prolonged seizure (a seizure that lasted 5 minutes or longer) or repeated seizures (3 or more seizures within 1 hour) have a written emergency care plan agreed with their healthcare team that sets out how they should be cared for if they have prolonged or repeated seizures again.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.14.1.4.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
a) Hospital episode statistics contain the data necessary for the monitoring of accident and emergency attendances
b) and c) Local data collection.

Definitions

An agreed written emergency care plan should describe what happens in the event of a prolonged or repeated seizure, including pharmacological treatment that should be given and actions to take, who to contact and when. It should be agreed between the adult with epilepsy, their family and/or carers if appropriate and their primary and secondary healthcare professionals. Family members and/or carers of adults with epilepsy will need training in order to initiate treatment at home or in the community when necessary. The plan should be reviewed at least annually.
Prolonged seizures are seizures that last 5 minutes or more.
Repeated seizures are seizures that occur 3 times or more within 1 hour.
Any adult with epilepsy who has experienced a prolonged or repeated seizure is considered to have a history of prolonged or repeated seizures.

Referral to tertiary care

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral.

Rationale

Tertiary referrals can be vital for a number of reasons such as 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 measure

Structure
Evidence of local arrangements for adults who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
Process
Proportion of adults who meet the criteria for referral to a tertiary care specialist who are seen within 4 weeks of referral.
Numerator – the number of people in the denominator who are seen within 4 weeks of referral.
Denominator – the number of adults who meet the criteria for referral to a tertiary care specialist.
Outcome
Patient satisfaction with referral to a tertiary care specialist.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
Healthcare professionals ensure that adults who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral.
Commissioners ensure they commission services for adults who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
Adults who meet the criteria for referral to a tertiary care specialist (someone who works as part of a specialist centre with a team of healthcare professionals experienced in assessing epilepsy that is hard to treat or complicated) are seen within 4 weeks of referral.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.10.2.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
Local data collection.

Definitions

NICE clinical guideline 137 recommends that referral to tertiary services should be considered when one or more of the following criteria are present:
  • The epilepsy is not controlled with medication within 2 years of onset.
  • Management is unsuccessful after 2 drugs.
  • The adult experiences, or is at risk of, unacceptable side effects from medication.
  • There is a unilateral structural lesion.
  • There is psychological or psychiatric comorbidity.
  • There is diagnostic doubt as to the nature of the seizures or the seizure syndrome.
A tertiary care specialist in epilepsy is an adult or paediatric neurologist who devotes the majority of their working time to epilepsy, is working in a multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources, and is subject to regular peer review.

Re-access to specialist care

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults with epilepsy who have medical or lifestyle issues that need review are referred to specialist epilepsy services.

Rationale

People living with epilepsy may need to seek expert opinion if there are changes in their medical situation or they have lifestyle issues that are affected by their epilepsy or its treatment. It is important that they are able to have timely reviews by specialists to address any issues and receive accurate information to help them make informed choices.

Quality measure

Structure
Evidence of local arrangements for adults with epilepsy who have medical or lifestyle issues that need review to be referred to specialist epilepsy services.
Process
Proportion of adults with epilepsy who have medical or lifestyle issues that need review who are referred to specialist epilepsy services.
Numerator – the number of people in the denominator who are referred to specialist epilepsy services.
Denominator – the number of adults with epilepsy who have medical or lifestyle issues that need review.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults with epilepsy who have medical or lifestyle issues that need review to be referred to specialist epilepsy services.
Healthcare professionals ensure that adults with epilepsy who have medical or lifestyle issues that need review are referred to specialist epilepsy services.
Commissioners ensure they commission services for adults with epilepsy who have medical or lifestyle issues that need review to be referred to specialist epilepsy services.
Adults with epilepsy who continue to have seizures, have side effects from medication or need specialist advice (for example, a woman who is planning a pregnancy) are referred to specialist epilepsy services for a review.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.20.7 (key priority for implementation).

Data source

Structure
Local data collection.
Process
Local data collection.

Definitions

Medical or lifestyle issues that need review by a specialist include:
  • diagnostic uncertainty
  • pregnancy
  • consideration of drug withdrawal
  • recurrence of seizures
  • side effects of medication.
Any healthcare professional the person with epilepsy sees may determine that they need a specialist review, for example a GP, nurse or hospital doctor.
Specialist epilepsy services include secondary care services, tertiary services and specialist epilepsy nursing, which may be based in the community. The service that is most appropriate to provide the review will depend on the particular medical or lifestyle issue.
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Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

Information for the public

NICE has written information for the public on each of the following topics.

Pathway information

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Supporting information

Children (aged 28 days to 11 years)

All investigations for children should be performed in a child-centred environment.
Children, young people and adults with epilepsy should have a regular structured review and be registered with a general medical practice.
If the structured review is to be conducted by the specialist, this may be best provided in the context of a specialist clinic.
Treatment should be reviewed at regular intervals to ensure that children, young people and adults with epilepsy are not maintained for long periods on treatment that is ineffective or poorly tolerated and that concordance with prescribed medication is maintained.
Annual review should include an enquiry about side effects and a discussion of the treatment plan to ensure concordance and adherence to medication.
For more information on adherence to medication, see what NICE says on medicines optimisation.
At the review, children, young people and adults should have access to: written and visual information; counselling services; information about voluntary organisations; epilepsy specialist nurses; timely and appropriate investigations; referral to tertiary services including surgery, where appropriate. See also information for young people and when to refer to a tertiary epilepsy service.
Aim for seizure freedom before conception and during pregnancy (particularly for women and girls with GTC seizures) but consider the risk of adverse effects of AEDs and use the lowest effective dose of each AED, avoiding polytherapy if possible.

MHRA advice on valproate

In April 2018, we added warnings that valproate treatment must not be used in girls and women including in young girls below the age of puberty, unless alternative treatments are not suitable and unless the conditions of the pregnancy prevention programme are met. Valproate must not be used in pregnant women. See also the MHRA toolkit to ensure female patients are better informed about the risks of taking valproate during pregnancy. Medicines containing valproate taken in pregnancy can cause malformations in 11% of babies and developmental disorders in 30–40% of children after birth.

Glossary

seizures characterised by behavioural arrest associated with generalised spike wave activity on EEG
the extent to which a person's behaviour matches the prescriber's recommendations; adherence emphasises the need for agreement and that the patient is free to decide whether or not to adhere to the doctor's recommendation
where a medication is added to a first-line anti-epileptic drug for combination therapy
anti-epileptic drug: medication taken daily to prevent the recurrence of epileptic seizures
anti-epileptic drugs: medication taken daily to prevent the recurrence of epileptic seizures
generalised seizures characterised by sudden onset of loss of muscle tone
an epilepsy syndrome of childhood (5–14 years) characterised by focal motor and/or secondarily generalised seizures, the majority from sleep, in an otherwise normal individual, with centrotemporal spikes seen on EEG
a term that was initially applied to the consultation process in which doctor and patient agree therapeutic decisions that incorporate their respective views, but now includes supporting patients in medicine-taking as well as communication when prescribing (concordance reflects social values but does not address medicine-taking and may not lead to improved adherence)
an epilepsy syndrome with childhood onset, characterised by a plateau and regression of cognitive abilities associated with dramatic increase in spike wave activity in slow wave sleep (> 85% of slow sleep); there may be few seizures at presentation
a convulsive seizure that continues for longer than 5 minutes, or convulsive seizures that occur one after the other with no recovery between; this is an emergency and requires immediate medical attention
previously known as severe myoclonic epilepsy of infancy: an epilepsy syndrome with onset in infancy, characterised by initial prolonged, typically lateralised, febrile seizures, subsequent development of multiple seizure types including myoclonic, absence, focal and generalised tonic–clonic seizures, with developmental plateau or regression
electrocardiogram (a test that records the heart's electrical activity)
electroencephalogram (an investigation that involves recording the electrical activity of the brain)
a transient occurrence of signs and/or symptoms, the result of a primary change to the electrical activity (abnormally excessive or synchronous) in the brain
transient occurrences of signs and/or symptoms, the result of primary changes to the electrical activity (abnormally excessive or synchronous) in the brain
a distinctive disorder identifiable on the basis of a typical age of onset, seizure types, specific EEG characteristics, and often other features; identification of epilepsy syndrome has implications for treatment, management and prognosis
seizures that originate within networks limited to one hemisphere, discretely localised or more widely distributed
seizures that originate in, and rapidly engage, bilaterally distributed networks (can include cortical and subcortical structures but do not necessarily include the entire cortex)
a seizure of sudden onset involving generalised stiffening and subsequent rhythmic jerking of the limbs, the result of rapid widespread engagement of bilateral cortical and subcortical networks in the brain
description or history of ictal events (seizures)
a syndrome that is only epilepsy, with no underlying structural brain lesion or other neurological signs or symptoms; presumed to be genetic in aetiology and usually age dependent
idiopathic generalised epilepsy (a well-defined group of disorders characterised by typical absences, myoclonic and generalised tonic–clonic seizures, alone or in varying combinations in otherwise normal individuals)
a specific seizure type presenting in the first year of life, most commonly between 3 and 9 months; spasms are brief axial movements lasting 0.2–2 seconds, most commonly flexor in nature, involving flexion of the trunk with extension of the upper and lower limbs (sometimes referred to as 'salaam seizures')
intrauterine devices
juvenile myoclonic epilepsy; an epilepsy syndrome with an age of onset of 5–20+ years (peak 10–16 years) characterised by myoclonic seizures that most commonly occur soon after waking
a very rare epilepsy syndrome with an age of onset of 3–6 years characterised by loss of language (after a period of normal language development) associated with an epilepsy of centrotemporal origin, more specifically bitemporal spikes on EEG with enhancement in sleep or continuous spike and wave during slow sleep
epilepsy that starts in mid-childhood to adolescence with frequent brief seizures characterised by initial visual hallucinations, ictal blindness, vomiting and post-ictal headache; EEG typically shows interictal occipital spikes attenuated by eye opening
an epilepsy syndrome with an age of onset of 3–10 years characterised by multiple seizure types (including atonic, tonic, tonic–clonic and atypical absence seizures), cognitive impairment and specific EEG features of diffuse slow spike and wave (< 2 Hz) as well as paroxysmal fast activity (10 Hz or more) in sleep
an epilepsy syndrome with an age of onset of 18–60 months, characterised by different seizure types with myoclonic and myoclonic-astatic seizures seen in all, causing children to fall; the EEG shows generalised spike/polyspike and wave activity at 2–6 Hz (also known as Doose syndrome)
sudden brief (<100 ms) and almost shock-like involuntary single or multiple jerks due to abnormal excessive or synchronous neuronal activity and associated with polyspikes on EEG
deficiency or impairment of the nervous system
a change in mental status or behaviour from baseline, associated with continuous seizure activity on EEG, which is also seen to be a change from baseline
a disorder characterised by episodes of change in behaviour or movement, not caused by a primary change in electrical activity of the brain; movements are varied, and the attacks can be difficult to differentiate from epileptic seizures
epilepsy syndrome presenting in early childhood (mean 4–7 years) with rare, prolonged seizures; characterised by autonomic features including vomiting, pallor and sweating followed by tonic eye deviation, impairment of consciousness with possible evolution into secondary generalisation; prognosis is excellent and treatment often unnecessary
multiple different drugs used in a patient's treatment, which could include anti-epileptic drugs
two or more medications used in combination therapy
methods used to provoke seizures, such as hyperventilation, photic stimulation, sleep deprivation and withdrawal of medication
for children and young people: a paediatrician with training and expertise in epilepsy; for adults: a medical practitioner with training and expertise in epilepsy
sudden unexpected death in epilepsy: sudden, unexplained, witnessed or unwitnessed, non-traumatic and non-drowning death in people with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death
a brief lapse in consciousness caused by transient reduction in blood flow to the brain
an adult neurologist who devotes the majority of their working time to epilepsy, works in a multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources, and is subject to regular peer review
a paediatric neurologist who devotes the majority of their working time to epilepsy, works in a multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources, and is subject to regular peer review
tonic seizures are epileptic seizures characterised by abrupt generalised muscle stiffening possibly causing a fall; the seizure usually lasts less than a minute and recovery is rapid
an epileptic seizure characterised by initial generalised muscle stiffening, followed by rhythmical jerking of the limbs, usually lasting a few minutes; the person may bite their tongue, be incontinent, feel confused or sleepy afterwards, and take a while to recover fully

Paths in this pathway

Pathway created: January 2012 Last updated: April 2018

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