West Midlands epilepsy network

Dougall McCorry FRCP MD

Consultant neurologist/ epileptologist

University Hospital Birmingham

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.

Progress has been made- the UHB Complex Epilepsy & Surgery Programme

Patient

Referral

Neurology

(DM, IS, SS)

Neurosurgery

(RW, RC)

Other

UHB /

BSMHT

Referral

from

other

Trust

1st 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

Review of

investigation

results and

drug therapy.

Drug therapy

may change –

mono/poly

therapy.

Patient may

have non-

epileptic attack

disorder.

Referred onto

Neuropsychiatr

y (BSMHT)

If seizure control

obtained –

patient

monitored and

reviewed as

deemed

appropriate by

specialist

Neurologist.

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)

If

appropriate,

listed for

resective

surgery.

Non-resective options:

•Vagal Nerve

Stimulation (VNS)

•Deep Brain Stmulation

(DBS)

No surgical

option deemed

appropriate for

patient -

managed with

pharmacological

treatment.

Patient

monitored

following

surgery.

Followed up as

deemed

appropriate by

Neurosurgeon

and

Neurologist.

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

for VNS.

Initial

contact

and

diagnosis

Follow-up of

instituted

medical

management

Evaluation

for surgery

Surgical

options

Summary of my NHS experience after 5 years…But progress has and is being

made at UHB From To

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

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”

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?

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…

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 MSC 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 non-

surgical patients

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 MSC 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 non-

surgical patients

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.

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

West Midlands NASH 2 data

UHB DATA A/E attendances –epilepsy- 833 attendances Male 462/ FM371

0

50

100

150

200

250

300

350

400

450

500

1 2 3 4 5 6 7 10 12 20

n= 485 82 20 11 5 1 1 1 1 1

Nu

mb

er o

f p

atie

nts

A&E attendances - patients with diagnosis of Epilepsy (Apr 14 - Mar 15)

0

100

200

300

400

500

600

700

800

999 Foot Other Private Transport Public Transport Taxi

Mode of arrival

0

20

40

60

80

100

120

140

160

180

0-9 10-19 20-29 30-39 40-49 50-59 60-69 70-79 80-89 90-99 110-119

Total 2 61 147 122 139 165 71 56 56 13 1

Age distribution

0

50

100

150

200

250

300

350

400

Admitted toUHB

Home -GP

FollowUp

Clinic -First

SeizureClinic

Home -No

FollowUp

Clinic -Other

Home -ReturnED SOS

LeftAgainstMedicalAdvice

LeftWithout

BeingSeen

Other Transfer- BCH

Clinic -Fracture

Clinic

Clinic -Max Fax

Clinic

Clinic -Neurosu

rgeryHot

Clinic

Home -CPN

FollowUp

Home -HandsRolling

List

Total 366 242 86 76 26 17 6 4 3 2 1 1 1 1 1

Discharge Destination

0

100

200

300

400

500

600

Home /Private

Dwelling

Public Place Other Care/Nursing Home

UHB -Visitor

Other NHSTrust

Work UHB - Staff School University

Grand Total 559 161 35 27 16 14 13 4 2 2

Incident location

West Midlands admissions – average cost of admission- ? £3000-4000

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 RR1 542 2,140

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 RL4 289 1,015

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 239 988

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

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

Cost savings

• Prevention of 15 admissions to hospital would

Save the salary of a single epilepsy nurse.

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

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…. ?

Thank you