1. Reducing Epilepsy Related Deaths
All Party Parliamentary Group for Epilepsy
28th November 2018
#Prevent21Summit
SUDEP Action, registered charity (England & Wales), SC (Scotland).
Epilepsy Bereaved (founded 1995) is part of SUDEP Action.
sudep.org

2. Dr Paul Morrish Epilepsy in England
Consultant Neurologist Great Western Hospitals NHS Foundation Trust
Epilepsy in England
What is going on, why and what can be done?
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

3. Deaths associated with neurological conditions in England 2001 to 2014
National Neurology Intelligence Network
National End-of-Life Care Intelligence Network

4. Gender and Age – Epilepsy Deaths (34,000)
Note: From death certification.
Death with, not necessarily from, epilepsy
Number of deaths with a mention epilepsy by age group and gender, England, 2012 to 2014
Deaths increasing 3% per year
21% men and 12% women dying with epilepsy were under 51.
On average, men with epilepsy die 6 years younger than women with epilepsy (2yrs difference in gen population)
For under 60s, 50% from epilepsy, 50% with epilepsy.
Deaths associated with neurological conditions

5. Deprivation and Epilepsy
Age standardised death rates for epilepsy by deciles of deprivation, persons aged 20 and over, England 2012 to 2014
Deaths with epilepsy:
13.1 (per 100,000) in most deprived centile
5.1 per 100,000 in least deprived centile
Deprivation calculated using
Income
Employment
Health deprivation and Disability
Education Skills and Training
Barriers to Housing and Services
Crime
Living Environment
It is well documented, but not as yet well explained, that epilepsy prevalence varies with social deprivation; it is not clear whether this inequality in mortality is the consequence of prevalence, of poor care or both. Socioeconomic poverty is a well-known determinant of poor general health, which underlines the health inequalities link in relation to epilepsy related deaths.
Fair Society, Health Lives- The Marmot Review. The Marmot Review 2010
Deaths associated with neurological conditions

6. Why? 1. Epilepsy Prevalence varies with Deprivation
Deprivation makes an individual more likely to have epilepsy.
May be acquired - alcohol, cigarettes, drugs, head- injury; all predispose to developing epilepsy.
May be inherited - genes, prematurity could predispose to having epilepsy.
Most
Least
Epilepsy makes an individual more likely to become deprived - no job, no driving license, social exclusion.
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

7. Why? 2. Seizure control varies with deprivation
Range of seizure freedom reported by CCGs (QoF) 46-87%
Why?
Medical care is poor?
Self-care is poor?
More severe epilepsy?
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

8. High Prevalence + Poor Control = More Death
Summary, so far:
1. Epilepsy prevalence varies with deprivation: More deprivation, more epilepsy and vv. 2. Seizure freedom varies with deprivation: More deprivation, poorer epilepsy control.
High Prevalence + Poor Control = More Death
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

9. Where can you find the At-Risk People with epilepsy?
UK has 60,000 A&E attendances and 40,000 admissions due to epilepsy per year
Cost >£1Billion/year
What happens in A&E? : NASH Audit of presentation to A&E with seizure
(132 hospitals 2015)
Not seen by specialist in preceding 12 months
63%
No documentation of alcohol
No discussion of future seizure management
72%
Not seen by specialist during admission
78% (4-44% under c/o neurologist acc. CCG)
Not referred on to outpatient specialist appointment
56% (75% of over 80’s)
Very wide variation. Epilepsy care loses out if no champions.
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

10. Distribution of Neurology Services 2017 – “Hub and Spoke”
UK Epilepsy Services 1
UK: 1 neurologist per 83000
Europe average: 1 per 15000
Distribution of Neurology Services 2017 – “Hub and Spoke”
UK Neuroscience Centres (eg Southmead)
28 for 66M people (6 in London for 8.8M)
UK DGH with neurologists and beds (eg Truro) 21
UK DGH with visiting neurologists (eg Bristol RI)
134 (31 have 3 days or less)
UK DGH with no visiting neurologist 6
DGHs with no beds and <3/7 visit 6
28 Great Big Hubs 31
103 21
DGHs with no beds but >3/7 visit
DGHs with neurologist and beds
??!!
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

11. Population per FTE Neurologist
UK Epilepsy Services 2
NHS Sub-region
Population per FTE Neurologist
Training posts
NE and Cent London
28,111 74
NW London
77,946
South London
48,684
East Midlands
146,651 16
East of England
86,554 26
West Midlands
90,830 22
North West
96,673 23
Northern
98,625 18
Yorks/Humber
86,363 27
Kent Surrey Sussex
99,837 19
South West
73,394 20
Thames Valley
62,939 9
Wessex
108,477 10
839
423
611
763
758
923
881
790
669
1200
281
161
People With Epilepsy per Neurologist
Workforce figures approximated from Royal College of Physicians:
People With Epilepsy per Epilepsy Nurse
159 adult epilepsy nurses in UK (ie 2880 PWE/ESN)
24/94 ESNs appear to be community-based
PWE Prevalence figures approx. from Public Health England’s Focus Pack Tool:
ESN data gathered from Epilepsy Nurses Association (ESNA) and Epilepsy Action
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org

12. Summary
3% per annum increase in people living and dying with epilepsy
Death with epilepsy varies 3-fold with deprivation
Young men with epilepsy are dying excessively
Poor care, not enough champions in DGH/CCG
Neurology service according to history, not need (nb GIRFT, Service Review)
Solutions
Integration of Community and Hospital services with shared responsibility
A responsible epilepsy lead in each CCG/hospital
Focus on those coming to A&E/Admissions; improve assessment, care & after-care
Redistribution of skills to match prevalence of illness
Reduce/end deprivation
SUDEP Action’s Prevent21 Summit on Tackling Epilepsy Deaths – 2/3rd November 2018
sudep.org