Best in Staffordshire Awards Mid Staffordshire Community Epilepsy Service Phil Tittensor – Lead Epilepsy Nurse

Background Most common serious neurological condition 2070 patients SAS & CC CCG’s 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

Principles of new service Diagnostics Consultant led Secondary care On going intervention and management Nurse led Community based

Community Epilepsy Provision – not a new concept! Late 1980’s Doncaster (Taylor et al 1994) East Kent 2000 – present day 3329 people with epilepsy on epilepsy nurses caseload 5 wte nurses 18 community based clinics Lead nurse with Epilepsy Specialist Nurse (ESN) team

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

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, and telephone support for service users, families, carers and other professionals

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

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

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”

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

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

Caseload Balance Clinics/face to face contact 50% Telephone/ /in-reach 30% Research/audit/admin 20%

Clinic locations >weekly weekly fortnightly monthly < monthly research (fortnightly)

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

Unexpected benefit NEAD Support group Patient initiative Supported by the epilepsy service Potential to help ~120 people diagnosed with NEAD in our area

Wider Possibilities

Epilepsy Services General Neurologist Epilepsy Nurse Epileptologist Advanced diagnostics (telemetry) Epilepsy surgery, VNS

Patient Consultant Neurologist Specialist nurse RegistrarGPSI

Change of mindset Named specialist nurse for each patient (Frances 2013) Patient stays with nurse even if other professional’s 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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Patient & named specialist nurse Consultant neurologist EpileptologistNeurophysiologistNeuropsychiatrist

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 consultant’s Reduced in patient stays Reduced GP / A&E attendance

Further Information Tittensor P (2014) Staffordshire’s new, nurse led, community epilepsy nursing service. Epilepsy professional – in print. Copies of our Service Specification available on request Any questions?