Best in Staffordshire Awards Mid Staffordshire Community
Epilepsy Service Phil Tittensor Lead Epilepsy Nurse
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Background Most common serious neurological condition 2070
patients SAS & CC CCGs 2900 patients on local epilepsy database
Secondary care service from Stafford & Cannock Chase hospitals
95% patients exclusively under specialist nurse Approx. 700
patients under active review
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Principles of new service Diagnostics Consultant led Secondary
care On going intervention and management Nurse led Community
based
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Community Epilepsy Provision not a new concept! Late 1980s
Doncaster (Taylor et al 1994) East Kent 2000 present day 3329
people with epilepsy 1000+ on epilepsy nurses caseload 5 wte nurses
18 community based clinics Lead nurse with Epilepsy Specialist
Nurse (ESN) team
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Objectives To provide: Accessible and trustworthy source of
advice information and intervention Local care services with
advice, education and guidance Appropriate and tailored packages of
care by working with local services To support: People who display
poor management of their epilepsy and people who have seizures
refractory to treatment People with treatment adherence and
lifestyle management People to exercise the maximum levels of
independence and lifestyle choice possible
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Service description Nurse consultant led with additional
nursing and administrative support Provide an enhanced and
specialist level of care for the epilepsies through partnership
working with service users and other providers Holistic,
evidence-based approach to plan individualised intervention
following comprehensive epilepsy assessment Provide face-to-face
clinics, email and telephone support for service users, families,
carers and other professionals
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Service description Service users/families/carers to be active
partners in negotiating and agreeing care Adopt a counselling
approach at all times Barriers to communication Non-uniform Room
layout Validate seizure and syndrome types using ILAE multi-axel
classification system
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Service description Improve service users understanding of
epilepsy Safety and lifestyle implications SUDEP Driving Employment
Leisure Basic psychological interventions for people with NEAD;
refer to and liaise with local tertiary psychiatric and
psychological services for people needing more intensive
support
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Tertiary Centre SUSPECTED EPILEPSYSUSPECTED EPILEPSY SUSPECTED
EPILEPSYSUSPECTED EPILEPSY Secondary Care Neurology Nurse Led
Community Support Service Primary Care Post Diagnosis Support Local
Care Services Care Plan reviews / Joint care Planning Diagnosis
& initial treatment Care plan Step down annual reviews etc.
Support / open access Poor control Service promotion Care plan
changes Targeting of approach step up
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Referral Open system from any health professional or service
user Reasons for referral support and treatment following diagnosis
initiation of medication regime preconceptual counselling and
advice during pregnancy new seizures after twelve months of seizure
freedom service users contemplating withdrawal of medication
service users experiencing difficulties with medication advice due
to a change in social circumstances or lifestyle service users
diagnosed elsewhere who have moved into the catchment area
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What we have Agreement between the commissioners and secondary
care trust (MSFT) to provide a community service...BUT Service to
be delivered by one wte nurse and limited administrative support No
agreement for patient self-referral Service opened in July 2012
Transfer of all diagnosed patients to the community service
Governance from the Department of neurology MSFT Weekly patient
review Weekly neuroradiology meeting Regular meetings with
neurophysiology
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Caseload Balance Clinics/face to face contact 50%
Telephone/email/in-reach 30% Research/audit/admin 20%
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Clinic locations >weekly weekly fortnightly monthly <
monthly research (fortnightly)
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Research & Audit Research Lead Epilepsy Nurse is Principal
Investigator Empire SANAD 2 Audit National National Audit of
Seizures in Hospital Eslicarbazepine + Perampanel Local Service
evaluation Patient satisfaction survey Audit of AED usage
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Unexpected benefit NEAD Support group Patient initiative
Supported by the epilepsy service Potential to help ~120 people
diagnosed with NEAD in our area
Change of mindset Named specialist nurse for each patient
(Frances 2013) Patient stays with nurse even if other professionals
input is required Will require multi professional & multi
agency collaboration (e.g. Agreements for governance) Overarching
nurse consultant for each geographical / population area Clearly
defined roles / boundaries & referral pathways (e.g. NICE for
time to tertiary opinion in the case of refractory seizures)
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20
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Patient & named specialist nurse Consultant neurologist
EpileptologistNeurophysiologistNeuropsychiatrist
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Benefits Patient / nurse relationship Patient in more control
Career progression & succession planning Frees up time for
Neurologists Will be suitable for most people with epilepsy Cost
effective Nurse salary less than consultants Reduced in patient
stays Reduced GP / A&E attendance
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Further Information Tittensor P (2014) Staffordshires new,
nurse led, community epilepsy nursing service. Epilepsy
professional in print. Copies of our Service Specification
available on request Any questions?