West Midlands epilepsy network. Dougall McCorry FRCP MD Consultant neurologist/ epileptologist University Hospital Birmingham

Transcription

1 West Midlands epilepsy network Dougall McCorry FRCP MD Consultant neurologist/ epileptologist University Hospital Birmingham

2 Background My NHS experience 8 years as a NHS consultant My CV Failed attempt at funding a second epilepsy nurse. My NHS covered covered Hereford and QE- full time QE in 1 year.. It took 5 years First seizure service set up within a year- 5 years later it began to run efficiently Assisted in Obtaining an epilepsy surgery nurse 2014 following a prolonged military campaign Experience private sector Medico-Legal work- much more within my control.

3 Patient Referral Progress has been made- the UHB Complex Epilepsy & Surgery Programme Neurology (DM, IS, SS) Neurosurgery (RW, RC) Other UHB / BSMHT Referral from other Trust Initial contact and diagnosis 1 st appt in Neurosciences. Introduction into the epilepsy pathway. Diagnostics: EEG Sleep EEG AmbEEG Telemetry Imaging Lab Investigations Adequate and appropriate AED trials Referral to: Neuropsychology Epilepsy Nurse Follow-up of instituted medical management If seizure control obtained patient monitored and reviewed as deemed appropriate by specialist Neurologist. Review of investigation results and drug therapy. Drug therapy may change mono/poly therapy. Patient may have nonepileptic attack disorder. Referred onto Neuropsychiatr y (BSMHT) Evaluation for surgery Refractory epilepsy (no response to anti-epileptics). Reviewed in Multi- Disciplinary Team (MDT) meeting. Patient may have both epileptic and non-epileptic attacks. Joined up care between Neuropsychiatr y and Neurology. Further Investigations: Video Telemetry (+/- drug reduction) Invasive Monitoring (stereotaxic EEG/sub dural strips) Neuropsychology assessment Further Imaging (PET, SPECT, MRI) Non-standard Imaging (fmri, EEG-fMRI, VBM) Resective surgery not an option (e.g. epileptogenic foci in eloquent cortex) No surgical option deemed appropriate for patient - managed with pharmacological treatment. Patient monitored following surgery. Followed up as deemed appropriate by Neurosurgeon and Neurologist. If appropriate, listed for resective surgery. Surgical options Non-resective options: Vagal Nerve Stimulation (VNS) Deep Brain Stmulation (DBS) DBS period of telemetry monitoring to optimise DBS settings (requires inpatient stay). DBS patient goes home when settings optimised. Patient then followed up at intervals deemed suitable by Neurosurgeon/Neurologist. VNS Epilepsy nurse manages follow up care

4 Summary of my NHS experience after 5 years But progress has and is being From made at UHB To

5 OLD NHS? It's easier not to say anything. Shut your trap, button your lip, can it. All that crap you hear about communication and expressing feelings is a lie. Nobody really wants to hear what you have to say. Laurie Halse Anderson, Speak

6 Network Links National.Director Neurological Alliance.ABN..NICE etc Local SCN lead = Adrian Williams Senate. Specialist Commissioning.CCG s. Time to get our thoughts together on Invest to Save Ready to Roll for the day when clinicians and patients have a louder Voice

7 Report for the End of the Awaydays Are there problem spots in Wmids where pts are being disadvantaged? Are some pathways/protocols poorly developed and need work? Who should we see and how fast? Are there any silly inefficiencies? eg unnecessary or prolonged admissions Is anything clinically dangerous out there?

8 New NHS For last year's words belong to last year's language And next year's words await another Voice. T.S. Eliot, Four Quartets Debate then try and speak with one voice Can they really ask for advice then ignore it?? I ask given the difficulties improving epilepsy care in my own trust- how can or will an epilepsy network enact change

9 Meeting June 14 Examples of high quality care- Phil Tittensor community based nursing service Paediatrics epilepsy network. QE/ Barberry service Weaknesses We discussed some potential weaknesses in individual services the following points were raised Clinic times Monday to Friday only, no clinic or telephone advice available outside those times. Referral to Epilepsy surgery delayed. Prolonged waiting lists - telemetry, neuropsychiatry, neuropsychology Access to newer AEDs Transition from CAMMS (16) to adult services (19yrs) Birmingham City wide pathway for LD and epilepsy. MRI for LD patients no formal pathway should be epileptologist led or have a named lead. Numbers of epilepsy nurses eg none in Worcester, Heart of England NHS trust, Dudley, New Cross Hospital. Neurophysiology workforce Succession planning for a variety of staff groups Specialist higher education (for nurses) limited since MS C suspended Specialist LD service for adults with LD has been decommissioned in Coventry. Some suggested that non elective admissions have risen for this group of patients Need to move from epilepsy nurses to epilepsy nursing SERVICE Capacity within secondary care - one nurse in Coventry Neuropsychiatry waits for patients with none epileptic attack disorder (NEAD) Neuropsychology for surgical candidates limited, virtually no service for nonsurgical patients

10 Weaknesses We discussed some potential weaknesses in individual services the following points were raised Clinic times Monday to Friday only, no clinic or telephone advice available outside those times. Referral to Epilepsy surgery delayed. Prolonged waiting lists - telemetry, neuropsychiatry, neuropsychology Access to newer AEDs Transition from CAMMS (16) to adult services (19yrs) Birmingham City wide pathway for LD and epilepsy. MRI for LD patients no formal pathway should be epileptologist led or have a named lead. Numbers of epilepsy nurses eg none in Worcester, Heart of England NHS trust, Dudley, New Cross Hospital. Neurophysiology workforce Succession planning for a variety of staff groups Specialist higher education (for nurses) limited since MS C suspended Specialist LD service for adults with LD has been decommissioned in Coventry. Some suggested that non elective admissions have risen for this group of patients Need to move from epilepsy nurses to epilepsy nursing SERVICE Capacity within secondary care - one nurse in Coventry Neuropsychiatry waits for patients with none epileptic attack disorder (NEAD) Neuropsychology for surgical candidates limited, virtually no service for nonsurgical patients

11 The real network weakness? Unlike PD/ MS. Epilepsy is characterised by unpredictable paroxysmal attacks You can provide the best clinic room care, have an efficient surgical pathway but what happens when they walk down the street and collapse? NO A/E representatives or paramedic representatives.

12 NASH 2- Prof Tony Marson National Audit of Seizure Management in Hospitals 2 (NASH2) findings include: 36.5% had the management of future seizures discussed with the patient or carers 61.5% of patients who had epilepsy were not documented as having seen a medical specialist within the previous 12 months 48% had attended the same A&E as a result of a seizure in the previous 12 months 41% of patients attending A&E were on single antiepileptic drug (AED) and a further 22% were on no AED

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14 West Midlands NASH 2 data

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17 Number of patients UHB DATA A/E attendances epilepsy- 833 attendances Male 462/ FM371 A&E attendances - patients with diagnosis of Epilepsy (Apr 14 - Mar 15) n=

18 Mode of arrival Foot Other Private Transport Public Transport Taxi

19 Age distribution Total

20 Discharge Destination Admitte d to UHB Home - GP Follow Up Clinic - First Seizure Clinic Home - No Follow Up Clinic - Other Home - Return ED SOS Left Against Medical Advice Left Without Being Seen Other Transfer - BCH Clinic - Fracture Clinic Clinic - Max Fax Clinic Clinic - Neurosu rgery Hot Clinic Total Home - CPN Follow Up Home - Hands Rolling List

21 Incident location Home / Private Dwelling Public Place Other Care/Nursi ng Home UHB - Visitor Other NHS Trust Work UHB - Staff School University Grand Total

22 West Midlands admissions average cost of admission-? Provider Trust Name Provider Trust Code Primary Diag:G40 Epilepsy, Pri Diag:G41 Status epilepticus Secondary Diag:G40 Epilepsy, Sec Diag:G41 Status epilepticus, HEART OF ENGLAND NHS FOUNDATION TRUST RR ,140 UNIVERSITY HOSPITAL OF NORTH STAFFORDSHIRE NHS TRUST RJE 441 1,499 SANDWELL AND WEST BIRMINGHAM HOSPITALS NHS TRUST RXK 361 1,223 WORCESTERSHIRE ACUTE HOSPITALS NHS TRUST RWP 354 1,093 UNIVERSITY HOSPITALS COVENTRY AND WARWICKSHIRE NHS TRUST RKB 310 1,454 THE ROYAL WOLVERHAMPTON NHS TRUST RL ,015 UNIVERSITY HOSPITALS BIRMINGHAM NHS FOUNDATION TRUST RRK 279 1,083 THE DUDLEY GROUP NHS FOUNDATION TRUST RNA 274 1,137 SHREWSBURY AND TELFORD HOSPITAL NHS TRUST RXW

23 Primary Diagnosis:G40 Epilepsy, Primary Diagnosis:G41 Status epilepticus Non-Elective & Elective admissions Tariff Cost by CCG CCG Name CCG Code Re-admission only 90 days Re-admission only 28 days Re-admission only 14 days BIRMINGHAM CROSSCITY 13P 200,239 55,381 27,993 SANDWELL AND WEST BIRMINGHAM 05L 112,584 55,122 28,057 WOLVERHAMPTON 06A 109,915 32,351 20,206 DUDLEY 05C 93,388 31,553 20,513 STOKE ON TRENT 05W 79,172 25,862 14,061 COVENTRY AND RUGBY 05A 69,088 29,605 17,126 BIRMINGHAM SOUTH AND CENTRAL 04X 67,993 15,795 5,735 WALSALL 05Y 67,923 24,348 14,395 SOUTH EAST STAFFORDSHIRE AND SEISDON PENINSULA 05Q 66,855 25,770 14,055 NORTH STAFFORDSHIRE 05G 64,414 14,103 9,643 SHROPSHIRE 05N 56,184 18,279 13,031 REDDITCH AND BROMSGROVE 05J 51,942 14,210 5,704 SOUTH WORCESTERSHIRE 05T 51,475 20,653 15,656 EAST STAFFORDSHIRE 05D 49,099 25,877 18,937 HEREFORDSHIRE 05F 45,370 14,108 7,856 SOLIHULL 05P 44,135 20,695 13,509 SOUTH WARWICKSHIRE 05R 40,766 10,482 3,174 WARWICKSHIRE NORTH 05H 37,620 18,971 6,924 CANNOCK CHASE 04Y 27,122 15,335 12,845 TELFORD AND WREKIN 05X 22,155 7,315 6,080 STAFFORD AND SURROUNDS 05V 20,421 6,302 1,922 WYRE FOREST 06D 13,081 5,229 5,229

24 Primary Diagnosis:G40 Epilepsy, Primary Diagnosis:G41 Status epilepticus Non-Elective Tariff Cost per 100,000 GP Patient Population CCG Name CCG Code Total Tariff Cost per 100,000 GP Patient Pop DUDLEY 05C 121,235 STOKE ON TRENT 05W 117,331 CANNOCK CHASE 04Y 110,976 REDDITCH AND BROMSGROVE 05J 110,404 NORTH STAFFORDSHIRE 05G 105,466 WOLVERHAMPTON 06A 102,677 WYRE FOREST 06D 101,107 SANDWELL AND WEST BIRMINGHAM 05L 94,188 WALSALL 05Y 93,491 BIRMINGHAM CROSSCITY 13P 92,532 COVENTRY AND RUGBY 05A 90,732 WARWICKSHIRE NORTH 05H 85,628 BIRMINGHAM SOUTH AND CENTRAL 04X 81,391 EAST STAFFORDSHIRE 05D 78,412 STAFFORD AND SURROUNDS 05V 77,803 SOUTH EAST STAFFORDSHIRE AND SEISDON PENINSULA 05Q 76,282 SOLIHULL 05P 73,255 TELFORD AND WREKIN 05X 68,189 SHROPSHIRE 05N 68,026 HEREFORDSHIRE 05F 63,667 SOUTH WORCESTERSHIRE 05T 62,802 SOUTH WARWICKSHIRE 05R 44,533 SHROPSHIRE AND STAFFORDSHIRE 13C 0

25 Cost savings Prevention of 15 admissions to hospital would Save the salary of a single epilepsy nurse.

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28 Opportunities for improvement- West Midlands epilepsy care meeting- Jan15 Patients with known epilepsy - reduce re-admissions rate through use of standardised care plan (Including red flags for 999) Introduction of Epilepsy Specialist Nurse Led fast track clinic for first seizure & known epilepsy (ideally a 7 day service) Agree a standard of care for A&E departments across the West Midlands Initiate an Alert System notifying the epilepsy team when a patient attends A&E or is admitted to hospital. Introduce a Direct referral from A&E to the Epilepsy Service Investigate the potential for a Regional pre-hospital pathway that supports WMAS and includes non-conveyance being notified to primary care. Patients with non-epileptic attack disorder (NEAD) -there is a one year wait and therefore a need to reduce delays. Address the need for Red flag patients to be seen promptly Community Specialist Epilepsy Nurses - to be introduced (neuro-rehab) First seizure patients introduce a standardised pathway Establish Self-management groups ( expert patient ) Recurrent admissions - introduce a system of identifying these patients and calling them to clinic WMAS data to be provided

29 The challenges to progress Very few epilepsy interested individuals e.g. how do we enact change in Heartlands? The CCGs and trusts are strapped for money - can we expect trusts to invest money in epilepsy care ( that will effectively reduce income.) How do we divert funds / persuade funders to change the status quo from crisis management to active management and prevention.?

30 Thank you