The National Sentinel Clinical Audit of Epilepsy-Related Death: Epilepsy-Death in the Shadows

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National Sentinel
Clinical Audit of
Epilepsy-Related
Death
National Sentinel
Clinical Audit of
Epilepsy-Related
Death
REPORT 2002: SUMMARY

The National Sentinel Clinical Audit of Epilepsy-Related Death was managed and
coordinated by Epilepsy Bereaved. The audit forms one of a series of initiatives to
improve epilepsy services conducted under the umbrella organisation of the Joint
Epilepsy Council. Participating organisations in the audit included the International
League against Epilepsy (British Branch), the Royal College of General Practitioners, the
Royal College of Nursing, the Royal College of Paediatrics and Child Health, the Royal
College of Pathologists and the Royal College of Psychiatrists (Learning Disability
Faculty).
The National Institute for Clinical Excellence (for England and Wales), the Scottish
Executive and the Northern Ireland Department of Health, Social Services and Public
Safety are associated with the National Sentinel Clinical Audit of Epilepsy-Related Deaths
through funding contracts. The funding bodies consider the work of the Audit to be of
value to the NHS in all countries in the UK and recommend that it be used to inform
decisions on service organisation and delivery.
The National Audit should be cited as follows:
Hanna N J, Black M, Sander JW, Smithson WH, Appleton R, Brown S, Fish DR (2002)
The National Sentinel Clinical Audit of Epilepsy-Related Death: Epilepsy – death in the
shadows. The Stationery Office.
© Epilepsy Bereaved
Epilepsy Bereaved Online Information (www.sudep.org)
The full report of the National Sentinel Clinical Audit of Epilepsy-Related Death
and information resources to support professionals, patients and families are
available from the Epilepsy Bereaved website, www.sudep.org.
Epilepsy Bereaved commissioned the College of Health to conduct research into
the experiences of bereaved relatives who contacted the charity during the period
of the audit. A report on this research will also be published on this site during
2002.

National Sentinel
Clinical Audit of
Epilepsy-Related Death
REPORT 2002: SUMMARY
Ms N. Jane Hanna Director of Epilepsy Bereaved;
Joint Epilepsy Council representative
Dr Marjorie Black Consultant forensic pathologist;
Royal College of Pathologists representative
Professor Josemir W. Sander Consultant neurologist;
International League against Epilepsy representative
Dr W. Henry Smithson General practitioner;
Royal College of General Practitioners representative
Dr Richard Appleton Consultant paediatric neurologist;
Royal College of Paediatrics and Child Health representative
Professor Stephen Brown Consultant neuropsychiatrist;
Royal College of Psychiatrists (Learning Disability Faculty)
representative
Professor David R. Fish Consultant clinical
neurophysiologist and neurologist; International League against Epilepsy
representative

Produced by Epilepsy Bereaved
Registered Charity 1050459
PO Box 112, Wantage, Oxfordshire, OX12 8ER
Office: 01235 772850
Bereavement contact line: 01235 772852
©Epilepsy Bereaved 2002
All rights reserved. The text of this report may be reproduced without formal
permission or charge for personal or in-house use. No reproduction by or for
commercial organisations is permitted without the express permission of
Epilepsy Bereaved.

©Copyright Epilepsy Bereaved 3
FOREWORD
We warmly welcome this landmark report and congratulate Epilepsy Bereaved for its project
management of the National Sentinel Clinical Audit of Epilepsy Deaths. We thank Epilepsy
Bereaved on behalf of the UK Health Departments for championing sudden unexpected death
in epilepsy and for successfully co-ordinating this multidisciplinary and wide-ranging project.
National sentinel audits are comprehensive clinical audits recently introduced in the NHS.
This audit of epilepsy deaths will enable health professionals locally to review their practice
and address any developmental needs.
Epilepsy is the most common chronic disabling condition of the nervous system affecting
around 400,000 people in the UK. Almost 1,000 deaths occur every year as result of the
illness and most of them are associated with seizures. There has been a need for some time to
better understand and reduce the number of epilepsy deaths.
This important and carefully executed piece of work focuses on that need. It reveals
weaknesses in both clinical service and aspects of the treatment infrastructure. It shows that by
addressing poor epilepsy management, there is the potential to achieve a reduction in the
number of deaths.
The audit was sponsored by the National Institute for Clinical Excellence (NICE), and the
health departments of the devolved administrations. A short summary report for England and
Wales, published by NICE, is also available. A similar short report is going to be published by
Epilepsy Bereaved and this will be disseminated in Scotland and Northern Ireland.
We recommend this report, which will be available widely to the National Health Service. We
also give a commitment to consider what can be done to address the weaknesses in care it
identifies. By doing this we will demonstrate that by taking action now, lives may be saved.
Sir Liam Donaldson, Dr Ruth Hall,
Chief Medical Officer England Medical Officer Wales
Dr Mac Armstrong, Dr Henrietta Campbell,
Chief Medical Officer Scotland Chief Medical Officer Northern Ireland

Box A
Definition of SUDEP
1
BACKGROUND
Epilepsy, meaning a tendency to have recurrent seizures, is the most common serious
neurological condition. At any one time between 1 in 140 and 1 in 200 people in the UK
(at least 300,000 people) are being treated for epilepsy (1,2). Each year, in a community
of 250,000 people, between 125 and 200 will develop epilepsy (3).
People with epilepsy have a risk of premature death that is 2–3 times higher than in the
general population (4). Most premature deaths among people with epilepsy are directly
related to the epilepsy itself. Every year in the UK about 1000 people die because of
epilepsy, and most of these deaths are associated with seizures. Sudden unexpected death
in epilepsy or SUDEP (Box A) is the principal cause of seizure-related death in people
with chronic epilepsy and has been estimated to account for about 500 deaths each year.
Young adults are most at risk of SUDEP, and most deaths occur at home. Although it is
not entirely clear what causes SUDEP, the most important risk factor is the occurrence
of seizures – the more frequent the seizures, the higher the risk (5). Since most epilepsy
deaths are related to seizures, good seizure control is the key to minimising the risk
of death.
What is SUDEP?
‘SUDEP is the sudden, unexpected, witnessed or unwitnessed, non-traumatic and
non-drowning death in patients with epilepsy, with or without evidence for a
seizure, and excluding documented status epilepticus, in which post-mortem
examination does not reveal a toxicological or anatomical cause for death.’ (6)
Most people with epilepsy (up to 70%) have the potential to be seizure-free, but five
government reports over a 50-year period have drawn attention to the neglect of epilepsy
and there has been little action (7). Another problem is the inconsistency with which the
causes of death in people with epilepsy are reported – this may be due to a lack of
awareness of epilepsy-related death among clinicians, coroners and pathologists (8,9).
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Box B
How the audit was
developed
2
AUDIT METHODS
The National Sentinel Clinical Audit of Epilepsy-Related Death – reported in summary
here – was the result of a call for a confidential enquiry into epilepsy-related deaths. The
aim was to establish whether deficiencies in the standard of clinical management, or in
the overall healthcare package, could have contributed to the deaths. Two key areas were
reviewed:
•investigations into the deaths (pathology)
•general practice and hospital-based care.
The audit was developed using a structured approach (Box B) involving
multiprofessional and lay groups. The audit team reviewed the official records of
individuals who died of an epilepsy-related death, in the UK, between September 1999
and August 2000. During that time, 2412 deaths were reported where epilepsy was
mentioned somewhere on the death certificate.
How was the audit developed?
A steering group provided overall guidance; an executive committee planned and
monitored audit activity; an audit officer and five nurses (fieldworkers)
identified cases and collected data.
Criteria for standards of care in pathology and primary and secondary care were
identified using published guidelines (including references 10–13), literature
searches and the views of expert panels in these three areas. Audit tools were
developed, and data were collected and analysed.
Panels of experts for review of the audit findings were drawn from pathology,
primary and secondary care to reflect the views of clinicians with a particular
interest in epilepsy care (panel membership is listed in appendix 1 of the full
report).

2.1
Box C
Audit of investigation
of deaths
NATIONAL SENTINEL CLINICAL AUDIT OF EPILEPSY-RELATED DEATH
Full details of the methods used for the audit are presented in the full report which is
available from the Epilepsy Bereaved website (www.sudep.org). Copies of the audit tools
and criteria are available from Epilepsy Bereaved.
AUDIT OF INVESTIGATION OF DEATH
Of the 2412 deaths with epilepsy on the death certificate, 1023 were subject to post-
mortem and 1389 were not.
For the audit of investigation of death, records were examined for 439 (43%) of the
1023 deaths for which there were post-mortem records and for 156 of the 1389 deaths
for which there were no post-mortem records (see Box C).
In the pathology audit the areas examined were: background, post-mortem examination,
further investigations and cause of death – with information collected from post-mortem
reports and coroner’s officer and police reports.
Deaths with post-mortem
records n = 1023
Deaths with epilepsy mentioned
on the death certificate n = 2412
Audited
n = 439 (43%)
Deaths without post-mortem records
(doctor-certified) n = 1389
Audited
n = 156 (11%)
Not audited
(coroner or procurator fiscal
did not respond)
n = 584
Not audited
(details of certifying doctor unavailable)
n = 1233
595 deaths (25%) audited for investigation of death
Further details of the investigation are contained in Chapter 2 of the full report.
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AUDIT METHODS
2.2
Box D
Audit of
pre-mortem care
AUDIT OF GENERAL PRACTICE AND
HOSPITAL-BASED CARE
For the audit of care before death, a total of 286 primary care case notes and 180
secondary care case notes were examined. (For more details of the cases audited,
see Box D.)
In the audit of general practice and secondary care the areas examined were: access to
care and clinical assessment, investigations, drug treatment, non-drug therapies,
continuing care, information and support, and communication between professionals
and services.
Case notes available for audit of
pre-mortem primary care n = 286
Patients in primary care
(for epilepsy) only n = 45
Patients who had been referred for
secondary care (for epilepsy) n = 241
Deaths where epilepsy was judged to be
probable cause of death from examination
of death certificate n = 812
(of 2412 deaths with epilepsy mentioned
on the death certificate)
Excluded from audit of pre-mortem care
because notes unavailable (n = 505) or
review of notes indicated death may not
be epilepsy-related (n = 21) Total n = 526
Secondary care notes audited n = 180
Adults
Without learning disability n = 108
With learning disability n = 50
Total n = 158
Secondary care notes unavailable n = 61
Children
n = 22
Further details of the audit of general practice and hospital-based care are contained in
Chapter 2 and Appendix 2 of the full report.

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3.1 INVESTIGATION INTO THE DEATHS
Although most deaths were confirmed as being in keeping with epilepsy as the cause,
many (87%, 383/439) of the deaths involving a post-mortem were considered to have
been inadequately investigated. Because deaths were not appropriately or adequately
investigated it was difficult to establish the true number and/or nature of epilepsy-related
deaths in this audit, highlighting a problem of reliance on national certification data in
relation to epilepsy deaths. The main problems with post-mortems were with ‘further
investigations’ and the ‘stated cause of death’ (Figure 1).
aThe post-mortem examination was inadequate only because at least one further investigation had not
been done. The values do not include examinations for which there was at least one other inadequacy in
addition to inadequate further investigations.
Figure 1
Categories in which post-
mortem investigation was
inadequate
10
0
20
40
50
60
80
90
28
41
36
000 000
87
41
52
31
26
39
100
Further
investigationsa
% of audited post-mortems
England n = 352
Wales n = 27
Scotland n = 56
N Ireland n = 4
Internal
examination Stated cause of
death
Category
External
examination
70
30
3
FINDINGS

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FINDINGS
3.1.1
Box E
Further investigations during
post-mortem
3.1.2
Further investigations
Further investigations (Box E) were not carried out or were not standardised. Of 439
post-mortems, 377 (86%) did not include all further investigations listed in Box E. 34%
(130/383) of post-mortems were inadequate only because at least one further
investigation had not been done (Figure 1 gives national percentages). These
investigations are important to eliminate other potential causes of death.
‘Further investigations’ carried out during
post-mortem
•Toxicology – blood analysis for alcohol and drugs
•Histology – microscopic examination of small pieces of major organs
•Neuropathology – specialist examination of brain and nervous system
Stated cause of death
Whether or not a post-mortem was carried out, the cause of death stated was inconsistent
and, in some cases, inappropriate. Of the 156 deaths certified without post-mortem, 39
were certified as due to epilepsy. Of these, 38% (15/39) were sudden and/or unwitnessed
and should have been subject to post-mortem. The cause of death was inadequately
stated in 41% (178/439) of deaths involving a post-mortem.
The main deficiencies in reporting a cause of death were as follows:
•Phrasing of the cause of death. This was very variable (Box F). ‘SUDEP’, which is a
term that has been in use since 1997, was cited in 9% (54/595) of audited cases.
•A cause was often cited (e.g. asphyxia, aspiration of stomach contents, status
epilepticus) despite a lack of pathological evidence.
•In some cases, every medical condition the person had was listed on the death
certificate, even where this had not contributed to the death.

Box F
Terms used to describe the
cause of death
NATIONAL SENTINEL CLINICAL AUDIT OF EPILEPSY-RELATED DEATH
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3.1.3
3.2
3.2.1
Some terms used to describe the cause of death
•Epilepsy
•Epileptic seizure
•Status epilepticus
•Sudden adult death syndrome (SADS)
•SUDEP
•Unascertained
Examination of the body
In a minority of deaths the external or internal examination of the body was considered
inadequate (27% [117/439] of external examinations and 7% [29/439] of internal
examinations).
AUDIT OF GENERAL PRACTICE AND
HOSPITAL-BASED CARE
Referral for specialist care
After a first seizure, individuals are normally referred to secondary care by their GP. Of
the 286 people whose GP case notes were audited, 84% (241/286) had been referred.
The referral process was analysed for people whose epilepsy was diagnosed recently (that
is, within 5 years before death; n=47). Information on referral and waiting times was
available for 26 of these individuals. Of these, 69% (18/26) had been referred by their
GP within 1 week; but for 15% (4/26) it had taken between 1 and 6 months to be
referred by their GP. Waiting times for a specialist appointment were long, with 15%
(4/26) of individuals having to wait more than 6 months (Figure 2).

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FINDINGS
Referral specialty
Referral should be to a specialist with an interest in epilepsy (12). Just under half
(18/37) of individuals diagnosed in the 5 years before death were initially referred to an
adult or paediatric neurologist (Figure 3).
3.2.2
Figure 2
Time from seeing GP to
appointment (n = 26)
10
0
20
40
50
60
80
90
69
23
16
8
54
4
16 12
0
100
Less than
1 week 7 to 12
months
Time taken for GP to refer
Time between referral and
appointment
1 week to
1 month 1 to 6
months More than
12 months
70
30
%
Figure 3
Chosen specialty for initial referral
Neurology (16) 43%
A&E (2) 5%
Learning disability (1) 3%
Psychiatrist (1) 3%
Elderly medicine (3) 8% General medicine (5) 14%
Other (4) 11%
Paed neurology (2) 5%
Paediatrics (3) 8%

NATIONAL SENTINEL CLINICAL AUDIT OF EPILEPSY-RELATED DEATH
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3.2.3
3.2.4
There was documented evidence that 80% (127/158) of the adults and 77% (17/22) of
children whose secondary care notes were audited had seen a consultant at some time
during their secondary care. The case notes indicated that 66% (91/138) of all adults seen
in outpatients had seen a neurologist during at least one of their last three appointments;
35% (7/20) of all children seen in outpatients had seen a paediatric neurologist during at
least one of their last three appointments.
Seizure status
•Of the people whose deaths were included in the audit of secondary care, 3% were
recorded as seizure-free at their last hospital appointment (Figure 4).
•None of the 22 children whose secondary care notes were audited were known to be
seizure-free in the year before they died.
•Primary care notes indicated that 11% (26/241) of patients referred to secondary care
had evidence of an increase in seizure activity in the three months before death.
Hospital visits
•At least 37% (54/147) of adults who were not recorded as being seizure-free had not
been seen in the year before they died.
•Around 15% (23/158) of adults had missed at least one of their last three
appointments but there was no standard way in which these missed appointments
were managed. Of the 23 adults who had missed at least one appointment, 57%
(13/23) had been sent at least one further appointment and 30% (7/23) were not
sent any further appointments; it was unclear what action had been taken in 13%
(3/23) cases.
Figure 4
Seizure frequency (adults and
children n = 180)
Between once a week
and once a month
(22) 12%
Not recorded (46) 27%
Unclear (36) 20%
Seizure free (6) 3%
Between once a month
and once a year
(35) 19%
Once a week or more (21) 12%
Less than once a year (8) 4%
Single seizure (or 1st in many years) (6) 3%

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FINDINGS
•Although all children were seen in secondary care in the year before death, it was
considered that 36% (8/22) of children had inadequate access to appropriate care.
The main deficiency was lack of access to appropriate specialist care for children
who had learning and/or physical disabilities and frequent seizures.
Re-referral
The audit of all of the primary care case notes showed a lack of re-referral by the GP for
individuals fulfilling the criteria for reassessment. Among the 241 individuals receiving
combined GP/specialist care, the GP notes suggested that 28% (68/241) fulfilled the
criteria for re-referral. Of these 68, only 9% (6) were re-referred. Although four
individuals receiving all of their care through the GP had a change in seizure frequency,
none was referred.
Special needs
There were particular concerns about access to specialist care for people with special
needs. For example, only 5% (2/43) of the adults with learning disability seen in
outpatients had evidence that they had seen a specialist with an interest in learning
disability and 6% (3/50) of adults with learning disability had been lost to follow-up in
the transfer from paediatric to adult care.
Clinical assessments
Documentation of clinical assessments was variable throughout primary and secondary
care. Many details were lacking in relation to classification of seizure type and syndrome,
seizure triggers, seizure frequency, drug treatment issues and non-drug therapies. For
example, in 47% (74/158) of adults and 36% (8/22) of children whose secondary care
case notes were audited seizure frequency had either not been recorded or was unclear.
Hospital investigations
•Secondary care notes did not report a scan for 57 adult patients (57/158, 36%) – at
least 19 of these should have had one according to existing guidance (11,12).
•There was no documented report of an EEG for 51 (32%) of the adult patients – at
least 22 of these should have had one because they were aged under 25 at the age of
diagnosis (12).
•no brain scan or EEG was documented for seven (32%) of the 22 children whose
secondary care notes were audited, although all of these children should probably
have undergone these investigations.
Drug management
•Most adults (76% [119/156; data unavailable for 2 adults]) were receiving one or
two anti-epilepsy drugs (AEDs). However, 6% (9/156) of adults and 18% (4/22) of
children were not receiving any anti-epilepsy medication when they died.
•Drug management was inadequate in 20% (32/158) of adults and 45% (10/22) of
children. Problem areas of drug management are shown in Box G.
3.2.5
3.2.6
3.2.7
3.2.8
3.2.9

Box G
Problem areas of drug
management
NATIONAL SENTINEL CLINICAL AUDIT OF EPILEPSY-RELATED DEATH
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3.2.10
Problem areas of drug management
•No medication prescribed despite ongoing seizures
•Inappropriate choice of AEDa
•Inappropriate combinations of AEDs
•Doses too low or inappropriate
•Unsupervised/inappropriate management of AED changes
•Little consideration of alternative or additional AEDs in cases of
ongoing seizures
•Major drug errors (e.g. abrupt cessation of treatment)
aAED = anti-epileptic drug
•In secondary care 14% (22/158) of adults had a problem adhering to their drug
regimen.
•In primary care 27% (65/241) of those referred had a documented medication
record. Of those with a drug record, 26% (17/65) ordered their medication later
than anticipated, indicating poor adherence.
Patient review through primary care
•From the audit of all the primary care case notes there was evidence that the review
process in primary care was unstructured and lacking in detail.
•Of patients who were also receiving secondary care, there was evidence that 78%
(187/241) had been reviewed by either the GP or specialist in the year prior to death
and 31% (75/241) had been seen by the GP at their last review.
•In the year before they died, there was documented evidence that only 33% (15/45)
of those who received all of their care through the GP had been reviewed.
•Most GP reviews were only to provide medication or to check blood drug levels.
•29% (82/286) of individuals whose primary care notes were audited had been seen
by their GP for non-epilepsy-related problems in the month before they died, which
would have been a good opportunity for the GP to talk about their epilepsy.
•In at least 13% (36/286) of deaths there were communication failures with no
action recorded following contact by a patient with A&E or an emergency GP, or
following recordings of increased seizure frequency.

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FINDINGS
3.2.11 Information provision
•There was little written evidence in secondary care to suggest that epilepsy and its
management, and in particular the hazards of epilepsy (including the risk of death),
had been discussed with individuals (Figure 5).
•Primary care notes indicated that 31% (89/286) of individuals with epilepsy had
some recorded information provision on epilepsy from a health professional in
primary or secondary care. Only 1% (3/286) had documented that information had
been given on the risk that seizures could be fatal, even amongst most of the
individuals in this audit whose epilepsy required ongoing care and who had many
apparent risk factors.
•The help of specialist epilepsy nurses and counsellors was rarely recorded and may
not have been used.
•Rarely was there any indication that the individual or their carer/family had been
told about voluntary organisations and patient advocacy support groups.
Consequently, they might not have been able to take advantage of the advice and
support that these organisations could have provided.
•Although at least 14% (22/158; secondary care audit) of adults had a problem
adhering to their drug regimen, there was little to suggest that this important issue
was discussed with patients. Further, only 9% (2/22) had documented information
about the hazards of seizures and none about the risk of death.
Figure 5
Information documented as
provided to adults and children in
secondary care n = 180
10
0
20
40
50
60
80
90
31
47
26
32
25
41
16
27
13
67
0
7
14
1
5
100
Side effects of AEDs
n = 167
Type of epilepsy or
syndrome
Social factors
Leisure factors
Importance of
taking AEDs n = 167
Hazards of seizures
Patient support
group information
Possibility of
fatal seizures
%
70
30
All adults n = 158
Children n = 22

NATIONAL SENTINEL CLINICAL AUDIT OF EPILEPSY-RELATED DEATH
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3.2.12
3.2.13
3.3
3.3.1
Contact with relatives after death
From the records audited, there was little documented evidence of contact with relatives
after a death. About 10% (18/180; secondary care audit) of families of people who died
were contacted after the death by the specialist. (Only 5% [8/158] of families of adults
were contacted compared with 45% [10/22] of families of children who died.) Only 7%
(19/286, primary care audit) of all families were contacted by the GP after the death.
Contact with relatives is particularly important in relation to epilepsy deaths because
many deaths are sudden and unexpected and families experience bewilderment, isolation
and prolonged distress (14).
Estimate of SUDEP deaths
Results of a review of the clinical circumstances of deaths reported in this audit suggests
that approximately 60% of all epilepsy deaths were SUDEP and a further 7% were
possible SUDEP. This is an estimate only and could not be confirmed because of the
inadequacy of post-mortem investigations reported in this audit.
PANEL REVIEW OF OVERALL
QUALITY OF CARE
Secondary care
An expert panel reviewed the specific findings from the audit of secondary care and
judged the overall quality of care received by individuals.
Adults
The panel considered that care had deficiencies for 54% (85/158) of adults (Figure 6).
There tended to be deficiencies in more than one aspect of care. The panel considered
that the main deficiencies in epilepsy management in these 158 adults, excluding lack of
information and support, were:
•inadequate access to specialist care 35% (56/158)
– access to outpatients 28% (45/158)
– not seen by consultant 7% (11/158)
•inadequate drug management (20%, 32/158)
•lack of appropriate investigations (13%, 21/158)
•no evidence of a package of care (5%, 8/158)
•inadequate recording of history (5%, 8/158)
•patient ‘lost’ in transfer from child to adult services (2%, 3/158)
•one or more major clinical management errors (5%, 4/158)

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FINDINGS
Figure 6
Distribution of inadequacies of
care in adults (85 of 158
deaths)
Note: the distribution is shown for the 85 adults whose care was judged to have had at least one
inadequacy; for some adults, care had more than one inadequacy
Overall, 39% (62/158) of adult deaths were considered by the expert panel to have been
potentially or probably avoidable.
Children
The panel considered that care had deficiencies in 77% (17/22) of children. There tended
to be deficiencies in more than one aspect of care. The panel considered that the main
deficiencies in epilepsy management in these 22 children, excluding lack of information
and support, were:
•inadequate drug management (45%, 10/22)
•inadequate access to specialist care (36%, 8/22)
•inadequate investigations (32%, 7/22).
Overall, 59% (13/22) of deaths in children were considered by the expert panel to have
been potentially or probably avoidable.
Inadequate access to outpatients (n = 45)
‘Lost’ in the transfer from child
to adult services (n = 3)
One or more major errors (n = 4)
Inadequate drug management (n = 32)
No evidence of a package of care (n = 8)
Inadequate history (n = 8)
Not seen by
consultant (n = 11)
Lacked appropriate
investigations (n = 21)

NATIONAL SENTINEL CLINICAL AUDIT OF EPILEPSY-RELATED DEATH
18 ©Copyright Epilepsy Bereaved
3.3.2
Figure 7
Main reasons that care was
considered inadequate in children
(17 deaths)
Inadequate drug treatment (n = 10)
Inadequate access to consultant (n = 8)
Inadequate investigations (n = 7)
Note: the distribution is shown for the 17 children whose care was judged to have had at least one
inadequacy; for some children, care had more than one inadequacy
Primary care
Detailed information in primary care records was sparse and for this reason judgements
of overall quality of care were not made in relation to individual patients who died. The
primary care panel considered the main inadequacies in primary care management were:
•lack of timely access to skilled specialists
•sparse evidence of structured management plans
•triggers for referral were sometimes missed
•professional communication failures.
For example, only 31% (8/26) were seen within 4 weeks by a specialist; only 8%
(6/72) of patients with indications for re-referral were referred to secondary care and
there were concerns about communication in 13% (36/286).

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4.1
4.2
AUDIT OF INVESTIGATION OF DEATHS
It was difficult to establish the true number and/or nature of epilepsy-related deaths from
national data. National statistics are an important source for monitoring public health,
setting targets for healthcare policies, and research aimed at reducing epilepsy-related
deaths. The results of this audit indicate that because of the high percentage of
inadequately investigated epilepsy-related deaths, action should be considered to
improve the quality of death certification in relation to these deaths.
Audit of general practice and hospital-based care
In general, record keeping was very poor throughout primary and secondary care.
Although an audit based on case notes cannot assess non-recorded activity and so the
findings may not be entirely comprehensive, the information obtained raises matters of
urgent concern.
Epilepsy-related death, particularly SUDEP, is still underestimated by healthcare
professionals and this may reflect the mistaken belief that epilepsy is a benign condition.
The risk of death associated with epilepsy appeared rarely to have been discussed with
patients or their families. There was little documented evidence of contact with bereaved
relatives after the death. These issues need to be highlighted with all relevant
professionals through better education.
There was concern about many aspects of epilepsy management and frequently
management did not meet published national criteria. There are particular problems in
managing epilepsy in people who have associated problems such as learning difficulties.
From the available documentation, the audit found evidence of deficiencies in access to
and quality of care, communication between clinical staff and between healthcare
professionals and patients and their families, documentation, and post-mortem
investigation of epilepsy-related deaths.
4
CONCLUSIONS

NATIONAL SENTINEL CLINICAL AUDIT OF EPILEPSY-RELATED DEATH
The audit highlights the need for education of healthcare professionals and organisations
responsible for epilepsy services about the principles of epilepsy management and the
risks of epilepsy-related deaths and the need for support to these services.
These system failures need to be addressed when planning professional education,
clinical and audit guidance and systems for service delivery. By its very nature, an audit of
epilepsy-related deaths should not be assumed to be representative of the care provided
to patients in general. Nevertheless, an audit can compare clinical care to published best
practice guidelines in a systematic way. This clinical audit does not establish that the
epilepsy-related deaths were directly caused by inadequate care – but it provides
important findings about shortcomings in care that may have contributed to a
substantial number of potentially avoidable deaths.
Further action
The audit report has been disseminated to policymakers and stakeholders to
provide strategic guidance for the prevention, investigation and management of
epilepsy-related deaths.
20 ©Copyright Epilepsy Bereaved

©Copyright Epilepsy Bereaved 21
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NATIONAL SENTINEL CLINICAL AUDIT OF EPILEPSY-RELATED DEATH
22 ©Copyright Epilepsy Bereaved
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