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It has been shown that reviewing people with epilepsy in general practice, reducing
polytherapy and changing treatment, can improve seizure control in over one-quarter of
patients, and reduce side effects in almost one-quarter21. In many cases, however, re-referral
to specialist care for these alterations may be more appropriate.

Integrated epilepsy care and community epilepsy schemes
Epilepsy care has traditionally been fragmented, with poor channels of communication
between primary and secondary care1, and between epilepsy specialists and the wider
multidisciplinary team. People with chronic epilepsy often have significant comorbidity
requiring psychological support and the input of mental health and social care services.
Uncoordinated care can lead to inconsistent advice for patients, inappropriate and
unnecessary investigations and interventions, and delays in diagnosis and initiation of
treatment23. Improved integration of care is key to improving the quality, safety and
efficiency of health services for people with chronic illness.

For some time, community epilepsy nurse specialists, community learning disability nurses
and GPs with special interest in epilepsy have helped bridge the gap between primary and
secondary care, providing a comprehensive epilepsy service in the community following
initial diagnostic evaluation in secondary care. Epilepsy nurse specialists are integral to
effective integrated care, evaluating need and access to multi-agency community services,
providing information and support to patients, their families and carers, and improving patient
knowledge and self-management. To date, the impact of nurse intervention on health
outcomes such as impact on unplanned admissions, seizure outcome and cost is largely
unexplored, but it is widely acknowledged that epilepsy specialist nurses enhance the
integration of epilepsy care and improve patient experience.

There has been a recent move by some clinical commissioning groups (CCGs) to commission
and develop more integrated community-based epilepsy services. The strategic vision of one
such model (pilot study, Camden CCG) aims to provide a ‘Step up and step down service’
between primary and secondary care services. Individuals will be seen by epilepsy specialists
and an epilepsy specialist nurse in the community, allowing improved communication with
GPs and better implementation of epilepsy care plans. People with stable epilepsy and those
with complex care needs will be stepped down into the community service, allowing greater
access to allied health professionals and improved communication across services. More
responsive and proactive care should result in reduced unplanned admissions due to epilepsy.
It is anticipated that delivering care in the context of integrated health and social care
provision with regular MDT meetings will better address the wider burden of epilepsy (such
as social exclusion, anxiety and depression), while offering improved psychosocial support,
and better access to employment advice and local support networks.

Integral to effective integrated care is timely sharing and dissemination of clinical
information. There is a move towards electronic patient records, which have been in use for
some time in primary care, although adoption into secondary care has been slower. A unified
care record system is required to enhance coordinated patient care and allow data to be
captured and interrogated. Improved integration across primary, secondary and tertiary care
and social services should result in improved sharing of information and ultimately improved
patient experience

Specialist care

After diagnosis, 20–40% of people with epilepsy will need follow-up in a specialist centre24.
The CSAG report recommended that epilepsy care should be based on epilepsy centres. These
would be well organised with good links to other services and with emphasis on shared care
and communication between the centre and general practices1.