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This article was published in February 2013. The information may be out of date. Please check our epilepsy information or our site A-Z.

Quality Standards for epilepsy published

28 Feb 2013

NICE logoToday the National Institute of Health and Clinical Excellence (NICE) in England has published its two ‘Quality Standards’ for epilepsy.

Although announced under the previous government, the Quality Standards is a key programme of the changes to the NHS in England. It is a programme designed to drive improvements to services and to increase the quality of care given to patients.

Two ‘Quality Standards’ have been produced; one for adults with epilepsy and one for children and young people. Each Quality Standard could be seen as a condensed version of some of the key points stated in the NICE Clinical Guidelines for the epilepsies.

The epilepsy Quality Standards are made up of nine Quality Statements. These are statements about the kind of services people with epilepsy should receive. Each statement is measurable, so there is a way of tracking whether each Statement is being met. All the Statements focus on ‘outcomes’, so meeting a Statement should lead to noticeable improvements in treatment and the quality of life of each person treated.

A Critical Time

Many of the ‘Quality Statements’ relate to areas covered by Epilepsy Action’s new research, featured in the A Critical Time for epilepsy in England report.

  • Statement 1 says that all people with a suspected seizure should be seen by a specialist within two weeks. A Critical Time found that only 20 per cent of adults and 13 per cent of children are currently seen within this time.
  • Statement 4 says that all people with epilepsy should have a written care plan. However only 14 per cent of people surveyed told us that they have a care plan at the moment.
  • Statement 5 relates to access to epilepsy specialist nurses. And only 52 per cent of adults reported ever having seen a nurse.
  • Statement 7 states that people who meet the criteria for referral to tertiary (specialist) centres should be referred within four weeks. However 73 per cent of patients who still have seizures (adults and children) have never been referred to a tertiary centre.
  • And Statement 9 discusses a transition period for young people moving from children’s to adults’ services. A Critical Time found only 32 per cent of young people have ever discussed moving between these services with a health professional.

This all shows that there is still a long way to go before people with epilepsy all receive services that meet these new Quality Statements.

Upon publication of the final versions of the Quality Standards, Simon Wigglesworth, deputy chief executive at Epilepsy Action said:

“We are really pleased that a Quality Standard for epilepsy has been produced. We know from A Critical Time for epilepsy in England that many people with epilepsy are not getting the care they should. For example our research showed that only half of people with epilepsy have seen an epilepsy specialist nurse. One of the new standards is that all people with epilepsy should have access to a specialist nurse. If the new standards are implemented consistently and effectively, care for people with epilepsy will be vastly improved.”

Epilepsy is the first neurological condition to be given its Quality Standards. Along with the NICE Clinical Guidelines, these documents should focus the minds of clinicians and commissioners to improve health services, particularly in the key areas covered. Now that the Quality Standards exist, the Statements can feed in to other key NHS documents and frameworks, making it more likely that epilepsy will feature and be addressed.

The Quality Standard for epilepsy (adults).


No.
Quality statements
1Adults presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
2Adults having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.
3Adults who meet the criteria for neuroimaging for epilepsy have magnetic resonance imaging.
4Adults with epilepsy have an agreed and comprehensive written epilepsy care plan.
5Adults with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
6Adults with a history of prolonged or repeated seizures have an agreed written emergency care plan.
7Adults who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral.
8Adults with epilepsy who have medical or lifestyle issues that need review are referred to specialist epilepsy services.
9Young people with epilepsy have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.

The Quality Standard for epilepsy (children and young people).

No.Quality statements
1Children 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.
2Children and young people having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.
3Children and young people who meet the criteria for neuroimaging for epilepsy have magnetic resonance imaging.
4Children and young people with epilepsy have an agreed and comprehensive written epilepsy care plan.
5Children and young people with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
6Children and young people with a history of prolonged or repeated seizures have an agreed written emergency care plan.
7Children and young people who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral.
8Children and young people with epilepsy have a structured review with a paediatric epilepsy specialist at least annually.
9Young people with epilepsy have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.

You can view the full Quality Standards documents, by visiting the NICE website: Adults children

You can also see what Epilepsy Action said about the draft Quality Standards, when we were consulted last year. For adults and for children and young people

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