This quality standard covers the diagnosis and management of the epilepsies in children and young people (aged up to 18 years). For more information see the scope for this quality standard.
Epilepsy is a common neurological disorder characterised by recurring seizures. It is estimated that 34,000 children and young people in England with a diagnosis of epilepsy are currently receiving anti-epileptic drugs. There are more than 40 different types of epilepsy, with 40 different associated seizure types. The nature of epilepsy means that it can be difficult to diagnose accurately. NICE's guideline on epilepsies: diagnosis and management estimates that in 5–30% of people diagnosed with epilepsy the diagnosis is incorrect. The Joint Epilepsy Council (2011) reported that up to 40% of children referred to tertiary epilepsy clinics do not have epilepsy. A diagnosis of epilepsy can have a wide-ranging impact on a child or young person's health and lifestyle. A key part of this quality standard is therefore focused on improving the diagnosis of epilepsy and ensuring that diagnosis and treatment are confirmed and reviewed as necessary.
For many children and young people diagnosed with epilepsy the seizures can be controlled through treatment with an anti-epileptic drug or other interventions. Optimal management improves health outcomes and can help to minimise other, often detrimental, impacts on social, educational and employment activity. This quality standard therefore includes a focus on tailoring treatment to the individual circumstances and needs of children and young people with epilepsy so that they are offered the most suitable treatment.
NICE quality standards describe high-priority areas for quality improvement in a defined care or service area. Each standard consists of a prioritised set of specific, concise and measurable statements. They draw on existing guidance, which provides an underpinning, comprehensive set of recommendations, and are designed to support the measurement of improvement. The quality standard, in conjunction with the guidance on which it is based, should contribute to the improvements outlined in the following frameworks:
The quality standard for the epilepsies in children and young people specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole epilepsy care pathway. An integrated approach to the provision of services is fundamental to the delivery of high-quality care to children and young people with epilepsy, and the quality standard should be delivered by multidisciplinary teams through a local epilepsy clinical network.
The quality standard should be read in the context of national and local guidelines on training and competencies. All healthcare professionals involved in assessing, caring for and treating children and young people with epilepsy should have sufficient and appropriate training and competencies to deliver the actions and interventions described in the quality standard.