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