Page 501 - ILAE_Lectures_2015

Chapter 57

Provision of clinical services for people with epilepsy

G.S. BELL1 and R.S.N LIU2

1UCL Institute of Neurology, National Hospital for Neurology and Neurosurgery, Queen
Square, London, and Epilepsy Society, Chalfont St Peter, Buckinghamshire, and 2Royal
Free London NHS Foundation Trust, Hampstead, London
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Epilepsy is the most common serious neurological condition in the UK yet provision of care
for people with epilepsy is patchy. The Clinical Standards Advisory Group (CSAG) report,
published in 20001, noted ‘a lack of focus for services for people with epilepsy and lack of
co-ordination between primary care, secondary care, specialist centres and the voluntary
sector’. Epilepsy has been highlighted as a national priority for action since 2001.

In 1997 the Scottish Intercollegiate Guidelines Network (SIGN) produced guidelines for the
management of epilepsy2, which were updated in 2003 and 20053. The National Sentinel
Clinical Audit of epilepsy-related death was published in 2002, and reported that a majority
of people had received inadequate secondary care and estimated that 39% of adults’ and 59%
of children’s epilepsy-related deaths were potentially or probably avoidable4. In response to
this, the Department of Health published its Action Plan5 which focused the attention of
health departments on epilepsy. Since the Action Plan, numerous government initiatives and
reports have included epilepsy in their recommendations – most notably the NICE guidelines
on the diagnosis and management of the epilepsies in adults and children in primary and
secondary care. Key points of the NICE guidelines were later summarised in the 2013 Quality
Standards in Epilepsy (QS26)6, which provide a blueprint for epilepsy care in the UK.
Epilepsy was the first neurological condition to be given quality standards (Table 1).

Table 1. Quality standard statements.
1. Adults presenting with a suspected seizure are seen by a
specialist in the diagnosis and management of the epilepsies
within two weeks of presentation.
2. Adults having initial investigations for epilepsy undergo the
tests within four weeks of them being requested.
3. Adults who meet the criteria for neuroimaging for epilepsy have
magnetic resonance imaging.
4. Adults with epilepsy have an agreed and comprehensive written
epilepsy care plan.
5. Adults with epilepsy are seen by an epilepsy specialist nurse
who they can contact between scheduled reviews.
6. Adults with a history of prolonged or repeated seizures have an
agreed written emergency care plan.
7. Adults who meet the criteria for referral to a tertiary care
specialist are seen within four weeks of referral.
8. Adults with epilepsy who have medical or lifestyle issues that
need review are referred to specialist epilepsy services.
9. Young people with epilepsy have an agreed transition period
during which their continuing epilepsy care is reviewed jointly
by paediatric and adult services.