Epilepsy services should be coordinated across whole care pathway, say NICE in new quality standard

NICE has today (28 February) published new quality standards for the epilepsies in adults, young people and children.

NICE quality standards describe high-priority areas for quality improvement in a defined care or service area. They are derived either from NICE guidance or NICE accredited sources, and apply right across the NHS in England.

The new quality standards on epilepsy consist of a prioritised set of specific, concise and measurable statements that, when delivered collectively, should contribute to improving the effectiveness, quality, safety and experience of care for people with the condition.

The quality standard for the epilepsies in children and young people contains nine statements. These include:

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

The quality standard for the epilepsies in adults also contains nine statements, including:

  • Adults having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.
  • Adults with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

Epilepsy is the most common serious neurological disorder in the UK, and currently affects around 600,000 peoplei. There are more than 40 different types of epilepsy, with 40 different associated seizure types. Epilepsy can impact upon a person's health and lifestyle, and affect employment, travel, sport and leisure. Epilepsy may also influence contraception choices and pregnancy. Avoiding seizure triggers such as a lack of sleep, alcohol, recreational drugs and stress may help. Epileptic seizures can be controlled with anti-epileptic drugs (AEDs).

Dr Gillian Leng, Deputy Chief Executive and Director of Health and Social Care at NICE said: "The nature of epilepsy means that it can be difficult to diagnose accurately. Therefore, a key part of these new quality standards is focused on improving this, and ensuring that diagnosis and treatment are confirmed and reviewed as necessary. I am sure these quality standards will be useful aids to all those involved in the care and treatment of this serious neurological condition."

Simon Wigglesworth, Deputy Chief Executive at Epilepsy Action, said: "We are really pleased that quality standards for epilepsy have been produced. We know from a recent studyii we carried out that many people with epilepsy are not getting the care they should. If the new standards are implemented consistently and effectively, care for people with epilepsy will be vastly improved."

Amanda Cleaver, Communications and Campaigns Manager at Epilepsy Society, said: "Epilepsy Society welcomes these quality standards which recognise the importance of getting a correct diagnosis, optimum treatment and the role of the epilepsy specialist nurse in patient care."

Ends

Notes to Editors

References and explanation of terms

i. Epilepsy Action.

ii. A Critical Time for epilepsy in England - Epilepsy Action, 2013.

About the draft quality standard

1. The new quality standard for the epilepsies in adults is available on the NICE website from 00:01 hrs on Thursday 28 February.

2. The new quality standard for the epilepsies in children and young people is available on the NICE website from 00:01 hrs on Thursday 28 February.

3. NICE has today also issued an updated guide to support the integrated commissioning of high-quality, evidence-based services for the referral and diagnosis of the epilepsies in adults and children. The guide covers suspected first seizure and access to specialist services, diagnostic investigations and referral and review for adults, children and young people with epilepsy. It is available on the NICE website from 00:01 hrs on Thursday 28 February.

Related NICE guidelines and quality standards

1. NICE clinical guideline 137 - The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care.

2. Patient experience in adult NHS services. NICE quality standard (2012).

3. Medicines optimisation. NICE quality standard (referred for development).

4. Managing the transition from children´s to adult services. NICE quality standard (referred for development).

About NICE quality standards

1. NICE quality standards aim to help commissioners, health, social care and public health professionals and service providers improve the quality of care that they deliver.

2. NICE quality standards help demonstrate delivery of high quality care in a particular high-priority improvement area through measurable statements. There is an average of 6-8 statements in each quality standard.

3. Quality standards are derived from evidence-based guidance, such as NICE guidance or NICE accredited sources, and are produced collaboratively with the NHS, social care or public health organisations, along with their partner organisations, patients, carers and service users.

4. NICE quality standards are not mandatory but they can be used for a wide range of purposes both locally and nationally. For example, patients and service users can use quality standards to help understand what high-quality care should include. Health, social care and public health professionals can use quality standards to help deliver excellent care and treatment.

5. NICE quality standards are not requirements or targets, but the healthcare system is obliged to have regard to them in planning and delivering services, as part of a general duty to secure continuous improvement in quality.

6. Quality standard topics are formally referred to NICE by the NHS Commissioning Board, (an executive non-departmental public body, established in October 2012) for health-related areas, and by the Department of Health and Department for Education for non-health areas such as social care.

7. There is more information on NICE quality standards on the NICE website.

About NICE

1. The National Institute for Health and Care Excellence (NICE) is the independent organisation responsible for providing national guidance and standards on the promotion of good health and the prevention and treatment of ill health.

2. NICE produces guidance in three areas of health:

  • public health - guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector
  • health technologies - guidance on the use of new and existing medicines, treatments, medical technologies (including devices and diagnostics) and procedures within the NHS

· clinical practice - guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS

  • social care - the Health and Social Care Act (2012) sets out a new responsibility for NICE to develop guidance and quality standards for social care. To reflect this new role, from 1 April 2013 NICE will be called the National Institute for Health and Care Excellence (NICE) and it will become a Non-Departmental Public Body.

3. NICE produces standards for patient care:

  • quality standards - these describe high-priority areas for quality improvement in a defined care or service area
  • Quality and Outcomes Framework - NICE develops the clinical and health improvement indicators in the QOF, the Department of Health scheme which rewards GPs for how well they care for patients
  • CCG Outcomes Indicator Set (formerly known as COF) - NICE develops the potential clinical health improvement indicators to ensure quality of care for patients and communities served by the clinical commissioning groups (CCGs).

4. NICE provides advice and support on putting NICE guidance and standards into practice throughits implementation programme, and it collates and accredits high quality health guidance, research and information to help health professionals deliver the best patient care through NHS Evidence.

This page was last updated: 27 February 2013