Introduction and overview

Introduction and overview

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.

Introduction

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.[1] 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 clinical guideline 137 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 table below shows the outcomes, overarching indicators and improvement areas from the frameworks that the quality standard could contribute to achieving:

NHS outcomes framework 2013–14

Domain 1: Preventing people from dying prematurely

Overarching indicators

1a Potential years of life lost (PYLL) from causes considered amenable to healthcare

1aii Children and young people

Domain 2: Enhancing quality of life for people with long-term conditions.

Overarching indicator

2 Health related quality of life for people with long term conditions

Improvement areas

Ensuring people feel supported to manage their condition

2.1 Proportion of people feeling supported to manage their condition

Improving functional ability in people with long-term conditions

2.2 Employment of people with long-term conditions

Reducing time spent in hospital by people with long-term conditions

2.3ii Unplanned hospitalisation for asthma, diabetes and epilepsy in under 19s

Domain 4: Ensuring that people have a positive experience of care.

Overarching indicator

4b Patient experience of hospital care

Improvement areas

Improving people's experience of outpatient care

4.1 Patient experience of outpatient services

Public health outcomes framework 2013–16

Domain 1: Improving the wider determinants of health

Objective

Improvements against wider factors that affect health and wellbeing and health inequalities.

Indicators

1.8 Employment for those with a long-term health condition including those with a learning difficulty/disability or mental illness 

Overview

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.