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In their report ‘Epilepsy in England: time for change’ (2009), Epilepsy Action highlighted
the wide variation in provision of epilepsy services, with many Trusts and PCTs failing to
meet the recommendations made by NICE7. Problems included:

 Inadequate access to specialists in epilepsy. Over half of all Acute Trusts and 64%
of PCTs did not employ an epilepsy specialist nurse; and almost half of Acute Trusts
surveyed did not employ an epilepsy specialist

 Excessive waiting times for a first appointment (over 90% of Acute Trusts did not
meet two-week waiting times)

 Inadequate access to diagnostic tests
 Lack of care plans and transitional services.

More recently in 2012 and 2014, two UK-wide epilepsy audits of hospitals with an emergency
department (ED) provided site-specific quality standards benchmarked against all
participating UK sites8. Although a small shift towards better care was seen between the first
and second National audit, on each occasion a wide variation in quality was observed and
much epilepsy care remained sub-optimal. Over half of individuals presenting to the ED were
on monotherapy with one of the older antiepileptic drugs (AEDs) and were not under
specialist review; and less than half the patients were referred onwards for specialist
neurology input. What is evident is that there continues to be significant geographic and
socioeconomic inequity in access to epilepsy care. Inadequate epilepsy care has significant
financial ramifications as a result of unnecessary hospital admissions, epilepsy misdiagnosis,
inappropriate use of emergency department resources and paramedic call-outs, and poor AED
prescribing8,9.

The National Service Framework, which sets out a programme for ten years to improve care
of people with long-term conditions, mentions epilepsy10. Other publications, including the
Expert Patients Programme11, and the White Paper ‘Our health, our care, our say’12 encourage
the participation of patients in their care. The chronic disease management (CDM) model was
set up as part of an international drive to improve the quality of long-term care while
containing health care costs13 (Table 2). Components of this model are highly applicable to
epilepsy care.

Table 2. Summary of recommendations in the CDM model13.

Self-management Integrated care Clinical guidelines Clinical information
systems
Knowledgeable Improve continuity Evidence-based Timely sharing and
patient and coordination of treatment and care exchange of clinical
care information
Active patient Enhance quality and Web-based electronic
participation in Multi-professional safety patient records
partnership with collaboration
healthcare Health service
practitioners Primary and specialist Improve consistency monitoring,
Improve compliance evaluation and
and adopt healthier care partnership of care planning
lifestyles

Role expansion, e.g. More efficient use of

nurse specialists healthcare resources