Chester Clinic

National audit of seizure management in hospitals

National Audit of
Seizure Management
in Hospitals
St. Elsewhere's Hospital Clinical Report, April 2014 2013 NASH Audit Report Prepared by:
Professor Mike Pearson, Professor of Clinical Evaluation Professor Tony Marson, Professor of Neurology Pete Dixon, NASH Study Coordinator Karen Scott, NASH Study Administrator The National Audit of Seizure Management in Hospitals is funded by Eisai Ltd, UCB Pharma, Viropharma and University of Liverpool. Please forward audit enquiries to:
Dr Pete Dixon +44 (0) 151 529 5271 [email protected] Contents
Foreword
Executive Summary
Background
Appendices
FOREWORD
This is the second UK-wide epilepsy audit and includes data from over 4,500 adult patients across 154 sites (from 132 Trusts/Health Boards) in England, Wales, Scotland and Northern Ireland. The aims of the original audit were to: a) describe and understand the organisation of care available for people presenting to Emergency Departments with seizures; b) describe the variations in care actually delivered; and c) set out options and opportunities for improving care and to share those with the hospitals, patient organisations and NHS managers in the hope that together they can act to effect improvement. The first NASH audit, 2 years ago, provided comparative data on the process of care and outcomes for individual sites against a benchmark of all other participating UK sites. It identified areas where care and processes are good, and areas where care and processes are poorer, thus highlighting areas where change, and perhaps investment, are required. It showed that many patients with active epilepsy are not being seen within specialist services, and are not receiving optimal therapy, i.e. opportunities to prevent seizures and thereby avoid acute hospital attendance and admission are being missed. When patients were seen, their assessment and management in the ED and on the wards was often sub-optimal and less than half were referred onwards to specialist services able to improve their care plans. There is a large financial burden on the NHS. If more patients got to see epilepsy specialists and had appropriate regimes and appropriate protocols put in place for acute seizures management, then, quite apart from the benefits to the patients, fewer admissions and fewer ED attendances would bring about large savings, and diminish the burden on clearly overstretched emergency services. All participating hospitals have had feedback reports with comparative data, and we ran 7 regional meetings to discuss the data. NASH2 using similar methodology asks what may have changed over 2 years . The questionnaire is very similar to the first audit but with some additions, improvements and subtractions based on the feedback received. NASH1 was based on the 2004 NICE guidelines and NASH2 relates also to the revision "NICE CG137 (January 2012)". Epilepsy is the first neurological condition to be given its Quality Standards by NICE and the data from NASH2 provide some information for 7 of the 9 standards (see Appendix Five). The most positive conclusion from NASH 2 is that there has been a small, but statistically significant, shift toward better care across the country. However, this must be balanced by observations that there continues to be a very wide range of care quality between hospital. A few centres have scored very highly showing that quality care is possible - but many have not. Each of the criticisms made of overall care 2 years ago, can be repeated again based on the current data. Individual hospitals returned data on 30 patients each so the comparisons between years must be interpreted with some care. For individual variables, a change in score of up to 30% can be within the limits of statistical chance - so it's important not to get over concerned with one or two items. The pattern of care across multiple variables is a better way of assessing the care standards and there are many hospitals where the opportunity, and need, for improvement is very obvious. All possible safeguards to preserve the quality of data collected have been made. Nevertheless it is important to interpret your results in this report using your knowledge of your own service and any

difficulties you experienced in collecting your audit data that may have biased your own outcomes. If you are aware of significant biases or inconsistencies in the reported data for your site, please inform the NASH study office as soon as possible We believe that showing care is still far from optimal across the country reinforces the need for change. If epilepsy care is to change then action is needed to address the whole spectrum across primary care, secondary and tertiary care, i.e. the whole patient pathway. This requires the active participation of many different individuals and so is likely to need CCGs and specialist commissioners to be actively involved. To achieve change in epilepsy services requires the support of many different individuals and groups within the health services. We recommend that this report be circulated as widely as possible, and that an action plan be formulated with the agreement of all interested parties to plan improvements that may be needed to your service. We intend to produce regional reports and peer-reviewed papers that will be distributed nationally with the intention of raising the profile of epilepsy at the highest level. We are grateful to everyone who has helped with the project and appreciate the very considerable amount of time and effort that has gone into obtaining local data. We hope that all participants will feel it has been worthwhile and that the audit represents a significant step in raising the profile of epilepsy and toward improving care for patients. Particular thanks are due to the steering committee for their helpful comments and advice and to the Epilepsy Action, Epilepsy Society and SUDEP Action who have provided invaluable advice from the patient's perspective. Thanks are also due to external funders (Eisai, Viropharma, and UCB Pharma) who have supplemented internal Liverpool funding of the audit. Prof. Tony Marson Prof. Mike Pearson Study Coordinator Joint Study Lead Joint Study Lead Study Administrator January 2014 P.S. For Information: there is a smaller paediatric pilot version of this audit from 15 hospitals across northwest England and north Wales that will be reported on separately. We will supply email versions of this to you in a few weeks time. EXECUTIVE SUMMARY
The 2011 National Audit of Seizure management in Hospitals (NASH1) was remarkable as the first
ever comprehensive audit of this condition in the UK. 127 hospitals with an Emergency Department
(ED) across the 4 home countries took part. The data have been fed back and trusts have had time to
reflect on the results. Now, two years on, the data collection has continued using the same proforma
(with minor modifications) offering the chance to assess if patterns of care have changed and, if not,
to consider how things might be changed for the future.
For NASH2, 154 hospitals have taken part and, again, have provided clinical data on at least 30
consecutive adult patients presenting with a seizure (from January 1st 2013) detailing both process
of care and clinical outcomes. Data were entered via an online system. This opened on June 12th
2013 and closed on September 30th 2013.
This report gives each site's clinical results benchmarked against all 154 UK sites (from 132
Trusts/Heath Boards) that completed the audit. A second report will shortly be produced that
examines the available resources and organisation of care.
A seizure presenting to the ED is a reasonably clear event from which a series of assessments and
actions should follow. As well as managing the acute episode, a seizure in someone with known
epilepsy represents a failure of therapeutic control, so assessment of past control and revision of
therapy should be considered to try and prevent a repeat. When it's a new event then clearly full
investigation should be mandatory. The audit questionnaire was designed to see if this happened.
The audit creates a national benchmark against which individual sites can assess their own
performance compared to others. For many variables reported on it will be quite obvious that the
particular item should have been completed. For example, few would argue against the need to
examine the neurological system of a patient presenting with a neurological event. This is perhaps
so obvious that it is presumed rather than stated in guidelines. From this audit however may come
discussion that allows us to set some formal targets/standards along the lines of those put in place
by the College of Emergency Medicine.
Overall Picture
Three particular findings emerge:
 it is encouraging that across the national cohort there are small but significant improvements from NASH1, but these are probably at a level at which patients will not perceive change  there is, as was found in the first audit, a pattern within the data that high performing sites tend to perform well across most variables and vice versa; and  the variation between the best performing and least well performing sites is extremely wide. If some can achieve these standards - why can't the others do so too? At the regional feedback meetings which followed NASH1, there was a general agreement that an aggregated overall measure might be useful, but some debate about the validity of our choices. However while our 7 variable selection may not be ideal, it does cover the spectrum of the patient pathway and in absence of a better alternative, we have repeated the exercise here. The overall rise in this statistic from 52% to 60% for the 101 sites who took part in both NASH1 and NASH2 is encouraging but there are still 18% of NASH2 sites who score below 50% on this measure. Can this be acceptable? In the introduction to the NASH1 report, we created a composite variable based on 7 items of care across the patients' care pathway. While there can be some continued debate as to whether these are the most important 7 items, we use it again to illustrate the changes over the 2 year period. In the NASH1 report and in our follow-up regional meetings we invited you to comment on this selection, and while a few comments have been made no one has yet suggested a better composite selection that reflects overall care. Probably the most comment at the regional meetings concerned the recording of a neurological examination within either the ED dept or (for those admitted) the ward stay. Some ED physicians felt that recording plantar responses or examining fundi was not an essential part of the ED role, while some neurologists argued it was essential part of a patient assessment after a neurological event. The judgement as to which is correct is not for us to decide - it must await a guidelines revision - but the fact that there is such a disagreement on a relatively simple aspect of care shows that there is a need for professional discussions to provide agreement as to what best care should be. For many of the variables there was agreement that the items should be performed and that the overall proportions observed in the audit were not acceptable. An example is the follow up by specialists where we accepted the widest possible definition of specialist, yet less than half of patients were referred on to specialist services for further assessment. The table below shows the national mean percentage of cases for the 101 sites involved in both rounds of the audit, together with your site's figures from NASH2. National mean National mean Your site –
Temperature taken in the ED Eyewitness statement taken or sought Plantars examined The patient had some neurology input during their attendance, or was referred to a neurologist as an outpatient Discussion around driving took place with the patient Sent home on at least one anti-epileptic drug (NB only applied to patients known to have epilepsy) Mean of the 7 variables above Five of the 7 variables exhibit a small, but significant, improvement overall, but the scatter of data within hospitals for each of the 7 data items remains high. The two graphs below show the variability across all sites. The average of the 7 variables (right hand most box and whisker) has a narrower, but still wide, range. With more data included the confidence interval is also less (+/- 11%), so there is less "wriggle room" to argue that the whole is down to "bad luck".

Figure 1: Key indicators and overall score for all sites taking part in NASH2 (inset graph shows equivalent from NASH1) Applying this composite to each local site and plotting NASH2 against NASH1 yields the graph below.
Sites in green have performed significantly better than last time while those in red are statistically
worse. From this representation it is clear that there are more hospitals that have performed better,
but we urge people not to over interpret such changes as absolute measures of care quality.
Figure 2: Comparisons of key indicator scores for NASH1 and NASH2 for those sites who participated
in both audits
There are other reasons why a given site may have done better or worse which have not been, and cannot be, controlled for in an audit. These include different patient cohorts, different staff in post and changes in the way units are run. Each local unit needs to consider the data and work out for themselves what they can interpret from the data. Interpretation and Actions
The wide range of performance cannot be justified on any medical criteria. Patients deserve a
uniform high standard of care and some hospitals are delivering just that, i.e. it is possible. Any
physician who has been involved in a medico legal complaint or serious incident is aware that failure
to do and record simple things, e.g. measure a temperature, is not excusable.
The NASH2 data replicate the performance of 2011 and indeed this is a similar situation that applied
to the stroke audit which was first done in 1998 with the second audit following in 2000. The factor
that changed stroke care was an attention to the organisation of care. Individuals need a system
within which they can operate well and that means asking questions about the care we observe.
In NASH1 we observed:
 that many patients are on therapy that could be improved upon i.e. many of these seizures were unnecessary  that the assessment and management was often less than ideal; and  that onward referral to the teams able to diagnose and control the disease often does not
All of these issues are present again in NASH2 - more so in some hospitals than others.
There is plenty within the audit to suggest that care could be better. The huge variability between
hospitals shows that some can and do provide excellent care. For the other sites, there are plenty of
local measures each hospital could consider to improve care.
Once again there was similar variability in stroke care in 2000 and the key was better organisation of
care - in that instance based around stroke units. Suggestions of how to organise epilepsy care are
needed since simple exhortations to do things better are unlikely to be enough. Moreover, any
system has to include ways in which primary, secondary and tertiary care can combine effectively to
ensure patients have optimum control. How this can be achieved is not within the remit of this
report, but there are suggestions being made and a recent Dublin paper (Iyer et. al., Epilepsy
Research and Treatment, vol. 2012, Article ID 273175, 7 pages, 2012. doi:10.1155/2012/273175)
reports a dramatic reduction in hospital stays and re-attendances with their particular system. Such
options suggest that better care may even prove to be cheaper care.
The headline findings of the clinical audit were as follows:
Clinical Data with Process of Care and Outcomes:
There were a total of 4,544 admissions registered. 57% of admissions were male and the median age was 45 years.  61% of admissions were of patients who were known to have epilepsy  17% were of patients who were known to have had previous seizures or blackouts but did not have a known diagnosis of epilepsy; and  22% were of patients with no prior history of epilepsy or blackouts/seizures, i.e. this was their first seizure. Findings
Notwithstanding the observation of a small overall improvement in many of the variables there were still many problems. These principle findings remain the same as those in the first NASH report: Anti Epileptic Drugs (AEDs) prior to the event – the 60% of patients presenting to the Emergency
Department who are already on AEDs include many on monotherapy and often with older drugs. - a
clear opportunity to improve control with modified therapy
Evidence of Senior Emergency Department Review – many patients are managed without a senior
review
Contacting eyewitnesses – patients cannot describe their own seizure yet in many hospitals it is
clearly not routine to seek a witness of the event
Documentation of whether the patient is a driver – Driving should be documented and advice given
– especially where it is a first event. This is not happening at many sites.
Documentation of alcohol intake – DoH guidance recommends alcohol use should be documented
in all, and especially where it is a known provoking factor for the event, but it is often not happening.
Recording of data – recording temperature, and recording GCS, should be routine , but there are
some sites where it is not.
Neurological examination – despite a loss of consciousness, a full neurological examination
including plantar reflex and fundi examination are not performed for most patients.
Obtaining expert epilepsy help – despite the most generous definitions, but more than half of
patients did not get such an assessment.
Drugs on discharge –many appear to not be sent home on the medication one might have expected
Food for Thought
This second UK national audit has confirmed that much epilepsy care is sub-optimal, that there is still excessive variability between hospitals, and yet some sites demonstrate that good care is possible. This affects primary, secondary and tertiary sectors  There were opportunities to improve the primary care before the index seizure - more than half of patients might have had the episode prevented with a more modern pharmacological approach, and most were not under specialist review  Hospital assessment (eyewitness statements, neurological examinations, simple investigations and advice to patients) were hugely variable – but a number of hospitals show that this can be achieved for most, if not all, patients  Onwards referral for specialist input occurred for less than half of patients and of those referred many did not attend. Data from Ireland suggests that active management can prevent future seizures and admissions  Now the results have been confirmed in a second audit this situation cannot be acceptable to patients. Movements now need to be made to address the question of how the care can be changed
Further information:
NICE guidelines on the management of the epilepsies and transient loss of consciousness (TLOC)
within the NHS in England and Wales are available from their website:
(epilepsies)
(TLOC)
Interpretation of the data in this report
Across the UK there were 127 sites describing 3,759 patients in 2011 and 154 reporting 4,544 in 2013. At the UK level, with large numbers, a relatively small percentage change of 2.5% in a particular variable will reach statistical significance. Thus an increase in the proportion having their temperature measured on arrival from 89.0% to 91.5% is statistically significant. If similar changes in the same direction are also seen in related variables, the confidence that something has changed is increased. Direct comparisons have been made using the whole of each cohort and repeated using only the 101 sites who completed both NASH1 and NASH2. For simplicity in this report we describe the changes in the whole of each cohort. However, patterns in the whole cohort and in the 101 sites are very similar and conclusions are the same. Wherever a change is noted "significant", the statistics apply to both forms of analysis There has been a small improvement in many of the variables reported upon between NASH1 and
NASH2. This is encouraging, but the wide variability between hospitals remains, and whether
patients could perceive the benefits of these small improvements is unclear.
Using local data
In this report we describe the national data and local figures in comparison. Because, on average,
only 30 cases have been audited at each site a simple comparison of proportions using Chi Squared
statistic requires a shift of absolute percentage change in a single variable of 30%, e.g. 40% to 70%.
Anything less could have happened just by chance in that site.
Rather than focus on individual variables, we suggest it is more useful to look at the patterns across
groups of variables and, in particular, to examine issues where there is an opportunity to make a
local change. This will vary between hospitals, but in most trusts there is an opportunity to make
improvements.
It is unlikely that concentrating on one aspect of care alone will solve the overall problem, and a
more co-ordinated approach involving primary secondary and tertiary care will be needed to really
make a difference.
BACKGROUND
Epilepsy is common and for those with an established diagnosis, each presentation to an ED represents a "failure" in control. Also, those presenting with a first seizure require appropriate acute management and rapid access to seizures services. Whilst there are many research studies in epilepsy that have summarised much of the evidence regarding treatment options for patients, little attention have been paid to assessing the organisation and delivery of epilepsy care across the UK. NASH 1 was the first ever national epilepsy audit in the UK and identified unacceptable variation in the quality of care, although some units are able to provide consistently good care given current resources. Regional centres of excellence exist that reach out in variable ways to district hospitals. But epilepsy is rarely a topic of discussion in those local hospitals, taking second (or worse) place to chronic conditions with a higher national profile e.g. myocardial infarction or COPD. The structures linking primary, secondary care and tertiary services are even less well defined and there are many opportunities for patients with epilepsy to be "lost" or "ignored" within the system. There is often no resident clinical "champion" within the district hospitals to argue for epilepsy care within the hospital or with the local PCTs. Thus it is in many ways an orphan condition. But 20 years ago both stroke and COPD were equally ignored. National audits can change care and practice. Previous experience of the study team in audits of myocardial infarction, stroke, carotid endarterectomy, evidence-based prescribing, COPD, lung cancer, continence, inflammatory bowel disease, blood transfusion, and palliative care have shown them to be successful in improving services as the results have been fed back to sites. NASH seeks to identify any variation in patient care and identify some of the resource and organisational factors that may account for this. The national audit data provides a first national benchmark against which clinical teams can compare themselves now, and monitor future change. The comparative performance data in this report should therefore provide a means of raising the standards of epilepsy care nationwide. Organisation and monitoring
The audit was coordinated from the University of Liverpool but employed local data collection in each site. It had a multidisciplinary steering committee with representation from professional bodies and patient groups (see Appendix One). The steering group oversaw the preparation, conduct, analysis and reporting of the audit process. Recruitment
Letters to the Chief Executives and Heads of Clinical Audit, and emails to participants from NASH1, were sent in February 2013 to all Trusts/Health Boards in England, Scotland, Wales and Northern Ireland which had sites with EDs. These contained general information about the audit and had a reply slip (and email address) for the addressee to send back to the study office indicating if they would be interested in learning more about the audit, with no obligation to take part. Further reminder letters and emails were sent to the Chief Executives, Heads of Clinical Audit and existing contacts from the Trusts/Health Boards who did not initially respond. Members of the steering group also identified named individuals from Trusts/Health Boards who had not indicated they would take part for the study coordinator to approach and encourage their participation. Of the Trusts/Health Boards eligible to take part, 132 participated. Some Trusts had more than one site take part (whilst a small number took part at a Trust-wide level ) with the result that data was collected from 154 sites. The main reasons for sites declining to participate in, or withdrawing from, the audit were the associated problems of shortage of staff and lack of time in which to complete the data collection. Staff shortages and changes in personnel also affected the data collections and meant that some sites had problems meeting the original targets and deadlines. Participating Trusts/Health Boards and sites are listed in Appendix Two. Development of the audit tool questions
The questions used in the audit were mostly the same as those in NASH1. Feedback from the first audit and input from the steering group led to some new questions being added and some existing questions, and potential answers, being refined. In most instances where answer options were refined they were of a minor nature (e.g. "not documented" being used in NASH2 whereas "not recorded" was the option in NASH1). For purposes of comparing the results from each audit, these have been considered to be analogous. Appendix Three contains the final versions of the clinical and institutional proformas. Development of the software
These data were collected using a bespoke web audit system written in C#.Net, and JQuery by a developer at the Clinical Trials Research Centre at the University of Liverpool, with the data being stored in a mysql database. The web system consisted of a set of e-forms:  Organisational – one per site assessing the facilities and staffing available.  Clinical – one per subject (20-30 subjects per site) to capture the clinical care pathway for individual patients. All sites entered their data over the internet using a web browser of their choice. The system was hosted on servers run by the Clinical Trials Research Centre at the University of Liverpool. Each site and patient were allocated unique identifiers within the system. No identifiable information were recorded in the system, or asked for by the e-forms. Online help was available for the majority of questions. Data collection
Sites were able to choose the most appropriate personnel to complete the audit locally. A variety of different grades of staff completed the audit including consultants, registrars, nurses and audit department staff. The medical staff involved in data collection were a combination of those from emergency medicine and neurology. The clinical data entry took place between 12th June and 30th September 2013. Anonymised data were requested for 30 consecutive patients who: a) presented on or over their 16th birthday; and b) presented at the Emergency Department with an episode thought to have been a seizure (relevant HES codes for seizures are shown in Appendix Four), and seizure was the primary reason for their admission / attendance The start date for these presentations was chosen as 1st January 2013. Although this was somewhat before the date that data entry was open, this allowed enough time for these patients to have progressed through the onward care pathway (e.g. referral and attendance at outpatient neurology clinics) for which we wished to collect data. The data collection was supported by online help notes associated with each question, and a dedicated email address for the study office was available to which any queries could be sent. Data collation and analysis
A number of consistency checks built into the electronic software helped to reduce typographical errors in data inputting and improve the quality of the data. Weekly data checks were made at the study office and an email highlighting missing data and/or data queries were sent to the participating staff at each centre. Presentation of results
The presentation of results is primarily comparative, using the national figures as the comparator. National figures are shown in plain text, with your own site's figures shown in bold. Results from the NASH1 audit are shown in red and in parentheses. For a number of questions, results are split according to the patients' known history of epilepsy and seizures. An annotated example table is shown below. Variation between sites is summarised for certain questions by use of box plots and/or inter quartile ranges. Figure 3: Example of a table used in the report PATIENT DATA
Patient Data were received from 154 sites within 132 NHS Trusts/Health Boards.
4,544 attendances at Emergency Departments from January 1st 2013 were available for analysis. The
median number of attendances per site was 30, range 9-40.
You contributed 30 attendances to the analysis.
St. Eleswhere's Hospital took part in both NASH1 and NASH2.
Clinical proforma completed by: %
Your site
Gender: %
Your site
Your site
National median = 45 (IQR 30-62). Your site's median = 42.5 (IQR 30.8 – 55.8)

Figure 4: Age distribution of cases contributing to NASH2 COMMENT: The demographics for NASH1 and NASH2 are similar – not surprising given the starting
point of was a consecutive series of patients arriving at ED.
NEW FOR NASH2: Does the patient live in the geographical area covered by
this Trust?: %
Your site
National ‘yes' figures
COMMENT: This question was recommended by a number of people in feedback to the NASH1
report. The rationale was that it would enable a more nuanced analysis of the data for certain
questions. For instance, if a hospital has a large number of attendances from people who live in a
different area, then some of the answers to questions about onward referral would be harder for
them to answer. We ran such sub analysis on a number of the questions and the differences were
found to be minimal both at both a national and individual site level. These sub-analyses are
therefore not shown in this report.
PREVIOUS SEIZURE HISTORY AND MANAGEMENT
Is there a statement that the patient is known to have epilepsy?: %
Your site
National ‘yes' figures NEW FOR NASH2: Does the patient have a written care plan in place?: %
Your site
COMMENT: This question suggests that 28% of all patients had a written care plan in place before
this episode, which is higher than other data suggests to be the case. We are concerned that this
new question may have been misinterpreted and welcome comments.
Is there documentation that the patient has had previous seizures or
blackouts?: %
Your site
National ‘yes' figures Nationally, 61% had epilepsy and 74% had previous seizures or blackouts. CLASSIFICATION OF PATIENTS
The results above make it possible to split the patients in to 3 distinct groups: 1. Those who are known to have epilepsy (n=2,759) 2. Those who are known to have previous seizures or blackouts, but not epilepsy (n=767) 3. Those who are not known to have either epilepsy or previous seizures or blackouts (n=1,011) NB 7 patients cannot be assigned to these categories because of missing data These three groups will be used throughout the rest of this report. Distribution of patient classes between audits: Patients with diagnosis of Patients with known Patients with neither blackouts or seizures, but blackouts/seizures
COMMENT: This second round of NASH has fewer patients labelled as having prior epilepsy. We
know of no reason for this change, and, although statistically significant, it may yet be due to chance.
NB some numbers will vary a little in the tables below when data are missing or not recorded – we
have not detailed all the reasons to avoid over complicating tables.
Provoking Factors:
Of those who are recorded as having previous seizures or blackouts: Was the patient's previous seizure or blackout provoked by alcohol?: %
Your site
National ‘yes' figures Was the patient's previous seizure or blackout provoked by head injury?: %
Your site
National ‘yes' figures Was the patient's previous seizure or blackout provoked by another factor?: %
Your site
National ‘yes' figures
COMMENT: 14.0% had a history of alcohol-related seizure.
Overall 36.3% (IQR 23.1 to 45.8) recorded one or more known provoking factors.
In each of the three tables above, it seems that there are fewer cases of no documentation
compared to the first audit - a small but useful improvement in the process.
NEW FOR NASH2: Has the patient attended this ED as a result of a seizure in
the previous 12 months?: %
(National audit/Your site)
diagnosis of epilepsy neither epilepsy or or seizures, but blackouts/seizures National ‘yes' figures MIN COMMENT: This shows that almost half of those patients with epilepsy have had seizures
necessitating a visit to ED in the past year. Many of those with blackouts but no epilepsy are also
repeat visitors – hinting that their problems are also not being resolved. This has huge cost
implications for the NHS and society and wider society, quite part form the impact on patients'
health and quality of life.
AEDS taken prior to arrival
This table lists the anti-epileptic drugs (AEDs) patients were being prescribed prior to this episode. N.B. Only drugs taken by at least 5% of patients with established epilepsy are shown. (National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no Valproate/Epilim/Epilim Lamotrigine/Lamictal ol/ Tegretol Retard Levetiracetam/Keppra Phenytoin/Epanutin Clobazam/Frisium One or More AED

COMMENT: Overall, prior drug treatment shows no significant differences between NASH1 and
NASH2, suggesting no significant changes in primary care management over the past 2 years.
Summary of Polytherapy
(National audit/Your site)
neither epilepsy or or seizures, but blackouts/seizures Two or more drugs Not taking AED prior
COMMENT: Sodium valproate remains the most commonly prescribed AED, taken by 34% of
patients with known epilepsy and often as monotherapy – thus 18.8% are on valproate as
monotherapy and 3.3 % are on phenyotin as monotherapy.
30-40% of patients with epilepsy are refractory, and refractory patients are more likely to attend ED.
The high proportion on monotherapy, or no therapy, (which ranges from 25% to 100% across sites)
persists which suggests that refractory patients are not getting access to appropriate expertise and
to newer treatments. Therefore, there remains an opportunity to intervene with more modern or
additional treatment to prevent future seizures. The range of drug prescription pre presentation
remains uncomfortably wide.
Summary of polytherapy when used
Number of AEDs being taken Percentage of polytherapy patients 2 Most popular duo polytherapy combinations Percentage of polytherapy patients (those in over 5% of cases) LEV/VPA
COMMENT: A few patients who are recorded as not having epilepsy or previous blackouts are
recorded as having AEDs prescribed prior to their attendance. This could indicate a recording issue
and thus they have been assigned to the wrong group, or it could be that they are taking them for
other indications.
Percentage of patients for whom it is documented that they have seen one of
the listed medical specialists within the previous 12 months: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no n=2,759 n=12 n=767
Epilepsy Specialist Nurse GPSI (neurology, epilepsy or neuropsychiatry) Learning disability Neurologist/paediatric None of the above *for paediatrician the denominator used is those patients aged 20 or under
COMMENT: The proportion of epilepsy patients who have seen an epilepsy specialist in the previous
12 months has risen (statistically significant). However, there were still 63% who had not, despite
over 50% having had a seizure-related ED attendances in the previous year. The variation between
trusts is as wide as can be seen below.
Figure 5: Distribution of number of patients who had not seen an epilepsy specialist in the past 12
months across sites (inset graph shows results from NASH1)
Percentage of patients for whom it is recorded that that they have a learning
disability: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no Learning disability SENIOR REVIEW IN EMERGENCY DEPARTMENT
Is there evidence of senior Emergency Department review, i.e. was the
patient seen (or was there a consultation about) by an ST4 or consultant?: %
(National audit/Your site)
diagnosis of epilepsy neither epilepsy or or seizures, but blackouts/seizures National ‘yes' figures MIN Was this within 4 hours of arrival in the Emergency Department?: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no National ‘yes' figures MIN COMMENT: It is an encouraging move in the right direction that significantly more patients were
seen by a senior clinician in NASH2. However, 43% of those discharged from the ED without
admission were seen only by junior medical staff - an observation that needs to be considered in the
light that about half of patients are referred (or their GP is advised to refer) for specialist advice
post-seizure.
ACUTE SEIZURE MANAGEMENT IN THE COMMUNITY AND ON
ARRIVAL TO THE EMERGENCY DEPARTMENT
Percentage of patients for whom it is documented that the following drugs
were administered prior to arrival at hospital: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no other (clobazam, paraldehyde)
COMMENT: Buccal midazolam is recommended as a treatment for prolonged seizure in the
community as it is easier to administer and is more dignified for the person with epilepsy. Diazepam
may be the most commonly administered drug in the table above as ambulance staff are trained to provide IV services. There has been no change in the use of these drugs between the two NASH audits. Had the seizure stopped by the time of arrival in the emergency room?: %
Your site
National ‘yes' figures Of those whose seizures had not stopped, what treatment was given in the
emergency room?: %
Your site
Buccal midazolam None of the above
COMMENT: For patients still seizing first line treatments in the Emergency Department were
lorazepam (43%), diazepam (38%) and phenytoin (35%). There has been a significant shift from IV
lorazepam to IV diazepam from NASH1, which is surprising as lorazepam is recommended.
INITIAL EMERGENCY DEPARTMENT ASSESSMENT
Was the patient fully conscious upon arrival at the Emergency Department?: %
Your site
National ‘yes' figures Percentage of patients for whom the following tests were undertaken in the
Emergency Department: %

Your site
Oxygen saturation levels Respiratory rate Figure 6: Distribution of number of patients who had diagnostic tests undertaken in A&E across sites (inset graph shows results from NASH1) Was the temperature taken within 20 minutes of arrival?: %
Your site
National ‘yes' figures What was their GCS?:
Your site
Patients recorded as being Patients recorded as not being conscious on arrival n=3,401 conscious on arrival n=942 GCS recorded (%) Median GCS Score
COMMENT: Not recording simple measures like temperature cannot be acceptable practice, so it is
good to note a significant improvement in this. However, national averages are still lower than they
should be (temperature being recorded in only 92% and GCS in only 90% of cases cannot be
considered a success) and there are some very low outliers.
Percentage of patients for whom a neuro obs chart was in place in the 4
hours following the patient's arrival at the Emergency Department?: %
Your site
National ‘yes' figures Patients recorded as being Patients recorded as not being conscious on arrival n=3,401 conscious on arrival n=942 Neuro obs chart present (%)
COMMENT: Temperatures are not routinely recorded on all patients, and even when not conscious
on arrival in the Emergency Department, the use of GCS and neuro-observations is far from routine.
Percentage of patients discharged directly home from the Emergency
Department: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no Percentage of patients transferred or admitted to the following departments
directly from the Emergency Department?: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no n=2,759 n=12
Intensive Care Unit Clinical decision unit ED observational ward EMU or equivalent Medical decision unit Discharged without Figure 7: Distribution of number of patients who were admitted across sites Percent of patients (except those who were discharged or for whom the
answer to the previous question was missing), who were under the care of
the following during admission?: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no n=1,541 n=10 n=396
General physician Remained under care of Emergency Department
COMMENT: Most patients are managed by general physicians, i.e. non neurologists. Most
admissions are, initially at least, to some form of medical assessment facility but a significant
number are managed by the Emergency Department, which was also found in NASH1.
Length of stay (days): %
(National audit) neither epilepsy or blackouts/seizures seizures, but no
COMMENT: HES data shows that seizures account for about 1.5% of all general medical emergency
admissions to acute hospitals and that they occupy a significant number of bed days. Do 57% of
patients presenting with a seizure require to be admitted, and if so for how long?
ASCERTAINMENT OF EYEWITNESS DESCRIPTION OF SEIZURE
Was an eyewitness to the seizure contacted?: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no n=2,759 n=12 n=767
No, but attempt was made to contact them No, and no attempt was made to contact them National figures for ‘good practice', i.e. either of the first three answers in the table above is ‘good': MIN Figure 8: Distribution of number of patients for whom an eyewitness account was taken or sought across sites (inset graph shows results from NASH1) COMMENT: Obtaining a good eyewitness description is vital for distinguishing among differing
causes of blackout and for diagnosing seizures. This question differs slightly from NASH1 in that we
added an option to say that the seizure was unwitnessed. This therefore increases the proportion of
patients for whom an eyewitness statement was taken or tried to be taken. However, it is
encouraging to note that there is a significant rise in the ‘yes' answers from NASH1. The inter-site
scatter remains uncomfortably wide.
ALCOHOL AND ILLICIT DRUG USE
It's a standard government recommendation (as well as good practice) to record alcohol intake in all
medical histories.
Percentage of patients for whom there is documentation of their general
alcohol intake?: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no n=2,759 n=12 n=767
Documentation present Of those patients for whom there was documentation of their alcohol intake,
how is their drink intake best classified?: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no
COMMENT: The national figures confirm that alcohol is a significant problem.
Percentage of patients for whom it is documented that in the week prior to
arrival at the Emergency Department they have been on an alcoholic binge: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no n=2,759 n=12 n=767
Documentation present Percentage of patients for whom there is documentation that they do or do
not use illicit drugs?: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no Documentation present Of the 474 patients for whom documentation around drug use was present, 36% were drug users
(your site: 100%). Of those, the most frequent drug used was cannabis (51.2%) with stimulants and
opiates both being taken by 27.1% of patients. Nationally, 2.4% of patients (your site: 3.3%) were
recorded to have taken an illicit drug in the 24 hours prior to arrival at the ED.
COMMENT: There has been little change in the proportions associated with engaging in illicit drug
use from NASH1. Some sites have much bigger problems than others, reflecting their catchment
area.
NEUROLOGICAL EXAMINATION
All these patients have had a neurological episode and thus all should have their nervous system
examined and documented as part of the diagnostic assessment – the two tests below are
representative of the process.
Percentage of patients with documentation that their fundi were looked at
and their plantar reflexes elicited at any time during attendance at the
Emergency Department: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no National fundi figures MIN National plantars figures MIN Figure 9: Distribution of number of patients who had fundi and plantars examined across sites (inset graph shows results from NASH1) COMMENT: In the 2011 NASH report, we stated:

"These figures are inexcusably low. If there was an enquiry to an individual case there are really no reasons for a neurology examination not to be performed." This comment caused more reaction than any others – ranging from those arguing that a full neurological examination is not required in the ED to those who believe it is mandatory. The extreme range of scores shown in figure 6 confirms the lack of concordance. Whilst most feedback did agree that a clinical neurological examination should be done for patients with a suspected first seizure, the observed range is as wide as for the other patient groups. We suggest that this is an issue that needs to be dealt with by a guidelines committee. Percentage of patients for whom the listed medical investigations were
undertaken following attendance in the Emergency Department: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no Anti-epileptic drug Glucose levels / BM * Percentages for AED levels are expressed for those patients who on attendance were recorded as
being on an AED for which it is easy to test the levels, i.e. carbamazepine, phenytoin, phenobarbitol,
primidone or sodium valproate.
COMMENT: There has been an significant increase in the proportion of first seizure patients having
an ECG which is recommended for all patients. There has also been a significant increase the number
of CT head scans, with a wide range across sites (one site performed a CT for 75% of these patients).
One would question the need for a CT head scan in 21.6% of people with an established epilepsy
diagnosis, . This suggests inefficient use of resources and the possibility of multiple exposures to x
rays for repeat attendees.
DISCHARGE AND DEATHS
Did the patient die during their admission?: %
Your site
(National audit) neither epilepsy or blackouts/seizures seizures, but no
COMMENT: the proportion of deaths is higher in the group of patients without an established
diagnosis (Chi-Squared 12.68 (2df)  p<0.01). This would be anticipated as this group of patients is
more likely to have acute or life-threatening pathologies.
The mean age of those dying was markedly older, i.e. mean 76 yrs vs. 45 yrs overall.
Causes of death in the 19 with epilepsy included 11 pneumonia/sepsis, 3 "vascular" and 2 cancer,
and in the 18 with no prior epilepsy 6 pneumonia/sepsis, 5 "vascular", and 2 cancer. In each group
there was one patient where seizures were implicated as a cause of death.
What was the diagnosis at discharge/death?: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no First unprovoked Unprovoked seizures with history of previous seizures, but no current epilepsy diagnosis Seizure in someone with established diagnosis of epilepsy Provoked seizure – Provoked seizure – drug Provoked seizure – Provoked seizure – Blackout with seizure markers, not sure if seizure Syncope/faint epileptic attack / pseudoseizure Self-discharged Percentage of patients who were sent home on any AED: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no Sent home on AED(s) (National audit/Your site)
diagnosis of epilepsy neither epilepsy or or seizures, but blackouts/seizures National ‘any change' figures MIN COMMENT: Almost 30% of patients with an established diagnosis of epilepsy were not sent home on
AED treatment, despite presenting with another seizure. While restarting AED treatment will not be
appropriate for all patients, this finding is a concern given that a significant proportion of patients
were neither seen by or referred onto an epilepsy specialist. However, we do not know whether
those said to be going home without AEDs are in fact simply being asked to continue with their
existing medications. The proportion in whom drugs are altered is independent of whether they are
or are not under neuro follow up.
Percentage of patients for whom the following investigations were requested
as an outpatient following discharge?: %
(National audit/Your site)
neither epilepsy or or seizures, but blackouts/seizures n=2,732 n=12
National figures for all patients DRIVING AND MANAGEMENT OF SEIZURES
The percentage of patients for whom there is documentation that they were
asked as to whether or not they are a driver?: %
(NB The total number of patients in this table is significantly less than for previous questions due to a large amount of missing data.) (National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no Was advice about driving given to the patient?: %
(NB the responses to this question are split based on the answer to the question above regarding whether they were asked if they were a driver). diagnosis of epilepsy neither epilepsy seizures, but no For those who were given advice what was that advice?: %
(NB the responses to this question are split based on the answer to the question above regarding whether they were asked if they were a driver). neither epilepsy seizures, but no
COMMENT: This is most important for first seizure cases. Data are similar to NASH1.
 It is not routine in most hospitals to ask patients who have had a seizure about driving – despite the obvious road safety implications for themselves and others  When driving status was asked about, significant numbers appear not to have been given  In the small number given advice most were told not to drive, but only half were told to Conclusion – the first question re documenting driving is probably the most important indicator
question. If the question was not asked it's rare for anything to follow, and it's a simple question
that should be documented for every patient with a seizure. In epilepsy patients this could be a
"breakthrough seizure" which means suspension of driving etc. You cannot presume the patient is
not driving because of past advice. In the other patient groups it should be mandatory - but is not.
Was management of future seizures discussed with the patient or carers?: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no n=2,732 n=12 n=761
National figures for all patients MIN
COMMENT: It is best medical practice (GMC good guidance) that the management should always be
discussed. The letter to the GP should include what the patient has been told. As each seizure is an
indication of treatment failure, these low numbers are worrying. However, the ranges above show it
is possible for this to be done for each patient.
NEUROLOGY/EPILEPSY TEAM ASSESSMENT
Percentage of patients for whom it is documented that at any point in time
advice was sought from a neurology / epilepsy team, or an assessment taken
by a neurologist or epilepsy specialist: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no n=2,759 n=12 n=767
Figure 10: Distribution of number of patients for whom advice was sought from a neurology/epilepsy team across sites (inset graph shows results from NASH1) Where advice was sought, from whom was it sought?: %
Your site
Epilepsy Specialist Nurse Neurologist/ Paediatric neurologist Neuropsychiatrist *for paediatrician the denominator used is those patients aged 20 or under
COMMENT: The use of specialist input varies massively – but the median figures are low – see below
with data on referral post visit.
Was the patient referred to any of the following specialists?: %
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no n=2,732 n=12 n=761
Epilepsy Service/First Fit Epilepsy Specialist Nurse GP with special interest in epilepsy (GPSI) Learning disability A neurologist at this Trust/Health Board A neurologist at another Trust/Health Board Alcohol/drug liaison service Referral to any of the
COMMENT: Onward referral continues to be the exception rather than the rule even for those with
a presumed first seizure. We have added in the alcohol referrals but still less than half get referred.
Feedback from NASH1 indicated that some hospitals were unable to make consultant-consultant
referrals, but needed to go via their local GPs. Therefore, for NASH2 we added a question asking if a
letter was sent to the GP (75.6% of all cases - see below) and if that letter advised the GP to refer on
(17.6% of letters). We have no data to know if the GP responded but even if that is considered an alternative to direct referral, and allowing for double counting, then the total referral rates remain below 50%. (National audit/Your site)
diagnosis of epilepsy neither epilepsy or or seizures, but blackouts/seizures (including GP requested ones) National ‘yes' figures MIN Of the patients who were referred, did they attend their appointment?
(National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no Epilepsy Service/First Fit Epilepsy Specialist Nurse GP with special interest in Learning disability A neurologist at this Trust/Health Board A neurologist at another Trust/Health Board Alcohol/drug liaison
COMMENT: The uptake of referrals can only be described as "patchy". If half of patients are
referred, and only half of those are seen, that implies that 75% of patients with seizures presenting
to ED are not being seen by specialists; but who else is likely to take on reviewing or managing these
patients?
NEW FOR NASH2: Was an A&E discharge letter provided to the patient's GP
following attendance at ED?: %
(National audit/Your site)
diagnosis of epilepsy neither epilepsy or or seizures, but blackouts/seizures National ‘yes' figures MIN
COMMENT: For many hospitals in England, this is a CQUIN target for hospital-primary care
communication, and it may be useful for you to compare this with local data that should be
available.
It is also of interest to look at how many patients had any neurology input during their attendance at
hospital or were referred as an outpatient for such, versus those for whom neither of these things
happen. For this, we classified patients as fulfilling this criteria if any of the following were true:
 they were transferred to a neurology ward from ED  they were under the care of a neurologist at some point in their hospital stay  advice was sought from a neurologist regarding the patient  they were referred to a neurology specialist as an outpatient (including GP-requested The results are as follows: (National audit/Your site)
neither epilepsy or blackouts/seizures seizures, but no n=2,732 n=12 n=761
Had some form of neurology input or Neurological input or referral at any time split by whether the patient has
been seen in the past 12 months by a medical specialist*: %
(National audit) Patients with known Patients with neither blackouts or seizures, blackouts/seizures Seen in prior 12 months Not seen in prior 12 months *The medical specialists are those who are listed in the question on page 21. COMMENT: There is a substantial cohort of patients who are not getting specialist neurological
input.
CONCLUSIONS
This is the end of the formal data presentation. It is for each hospital to determine how they can best respond to these data, and we are aware you may have further questions. Some you can resolve by reviewing your own data (which we have previously sent to you as an Excel spreadsheet) but other questions may suggest a need for further analyses of the national data. We cannot promise instant responses as we have limited resources, but we would like to hear your feedback and will respond to specific requests when we can. These data (in aggregate form) will be shared with the Health Quality Improvement Partnership along with others, and will hopefully be used by many to raise the overall standard of epilepsy care and improve lives for people with epilepsy. APPENDICES
APPENDIX ONE
NASH Steering Committee Professor Tony Marson (Joint Study Lead) – University of Liverpool Professor Mike Pearson (Joint Study lead) – University of Liverpool Dr John Craig – Representative for Northern Ireland Dr Colin Dunkley – Representative for the British Paediatric Neurology Association Ms Melesina Goodwin – Representative for the Epilepsy Nurses Association Dr Paul Jarman – Representative for the Association of British Neurologists Dr John Paul Leach – Representative for Scotland Professor Phil Smith – Representative for Wales and International League Against Epilepsy Dr Adrian Boyle – Representative for the College of Emergency Medicine Dr Richard Appleton – Representative for pilot paediatric NASH study Dr Greg Rogers – GP with Special Interest in Epilepsy Ms Angela Pullen – Representative for Epilepsy Action Mr Graham Faulkner - Representative for Epilepsy Society Ms Jane Hanna - Representative for SUDEP Action Dr Duncan Appelbe – Study IT Manager Dr Jamie Kirkham – Study Statistician Dr Pete Dixon – Study Coordinator Ms Karen Billington – Study Administrator APPENDIX TWO
Participating Sites Addenbrookes Hospital - Cambridge University Hospitals NHS Foundation Trust Antrim Area Hospital - Northern Health and Social Care Trust Arrowe Park Hospital - Wirral University Teaching Hospital NHS Foundation Trust Barnsley Hospital - Barnsley Hospital NHS Foundation Trust Bedford Hospital - Bedford Hospital NHS Trust Birmingham Heartlands Hospital - Heart Of England NHS Foundation Trust Bradford Royal Infirmary - Bradford Teaching Hospitals NHS Foundation Trust Bristol Royal Infirmary - University Hospitals Bristol NHS Foundation Trust Central Middlesex Hospital - North West London Hospitals NHS Trust Charing Cross Hospital - Imperial College Healthcare NHS Trust Chelsea & Westminster Hospital - Chelsea and Westminster Hospital NHS Foundation Trust Cheltenham General Hospital - Gloucestershire Hospitals NHS Foundation Trust Chesterfield Royal Hospital - Chesterfield Royal Hospital NHS Foundation Trust Colchester General Hospital - Colchester Hospital University NHS Foundation Trust Conquest Hospital - East Sussex Healthcare NHS Trust Countess of Chester Hospital - Countess of Chester Hospital NHS Foundation Trust Craigavon Area Hospital - Southern Health and Social Care Trust Crosshouse Hospital - NHS Ayrshire and Arran Croydon University Hospital - Croydon Health Services NHS Trust Cumberland Infirmary - North Cumbria University Hospitals NHS Trust Darent Valley Hospital - Dartford and Gravesham NHS Trust Darlington Memorial Hospital - County Durham and Darlington NHS Foundation Trust Derriford Hospital - Plymouth Hospitals NHS Trust Diana Princess of Wales Hospital - Northern Lincolnshire and Goole Hospitals NHS Foundation Trust Doncaster Royal Infirmary - Doncaster and Bassetlaw Hospitals NHS Foundation Trust Dorset County Hospital - Dorset County Hospital NHS Foundation Trust Dumfries and Galloway Royal Infirmary - NHS Dumfries and Galloway Ealing Hospital - Ealing Hospital NHS Trust East Lancashire NHS Trust Fairfield General - Pennine Acute Hospitals NHS Trust Forth Valley Royal Hospital - NHS Forth Valley Frenchay Hospital - North Bristol NHS Trust Friarage Hospital - South Tees Hospitals NHS Foundation Trust Frimley Park Hospital - Frimley Park Hospital NHS Foundation Trust Furness General Hospital - University Hospitals of Morecambe Bay NHS Foundation Trust George Eliot Hospital - George Eliot Hospital NHS Trust Good Hope Hospital - Heart of England NHS Foundation Trust Great Western Hospital - Great Western Hospitals NHS Foundation Trust Harrogate District Hospital - Harrogate and District NHS Foundation Trust Hinchingbrooke Hospital - Hinchingbrooke Health Care NHS Trust Homerton University Hospital - Homerton University Hospital NHS Foundation Trust Horton General - Oxford University Hospitals NHS Trust Huddersfield Royal Infirmary - Calderdale and Huddersfield NHS Foundation Trust Hull Royal Infirmary - Hull and East Yorkshire Hospitals NHS Trust Ipswich Hospital - Ipswich Hospital NHS Trust James Cook University Hospital - South Tees Hospitals NHS Foundation Trust John Radcliffe Hospital - Oxford University Hospitals NHS Trust Kettering General Hospital - Kettering General Hospital NHS Foundation Trust Kings College Hospital - King's College Hospital NHS Foundation Trust Kings Mill Hospital - Sherwood Forest Hospitals NHS Foundation Trust Kingston Hospital - Kingston Hospital NHS Trust Lagan Valley Hospital - South Eastern Health and Social Care Trust Leeds General Infirmary - Leeds Teaching Hospitals NHS Trust Lister Hospital - East and North Hertfordshire NHS Trust Luton & Dunstable Hospital - Luton and Dunstable Hospital NHS Foundation Trust Macclesfield District Hospital - East Cheshire NHS Trust Maidstone Hospital - Maidstone and Tunbridge Wells NHS Trust Manchester Royal Infirmary - Central Manchester University Hospitals NHS Foundation Trust Manor Hospital - Walsall Healthcare NHS Trust Medway Maritime Hospital - Medway NHS Foundation Trust Mid Yorkshire Hospitals NHS Trust Milton Keynes General Hospital - Milton Keynes Hospital NHS Foundation Trust Morriston Hospital - Abertawe Bro Morgannwg University Health Board (Bwrdd Iechyd Prifysgol Abertawe Bro Morgannwg) Musgrove Park Hospital - Taunton and Somerset NHS Foundation Trust Newham General Hospital - Barts Health NHS Trust Norfolk and Norwich University Hospital - Norfolk and Norwich University Hospitals NHS Foundation Trust North Devon District Hospital - Northern Devon Healthcare NHS Trust North Manchester General Hospital - Pennine Acute Hospitals NHS Trust North Tees and Hartlepool NHS Foundation Trust Northampton General Hospital - Northampton General Hospital NHS Trust Northern General Hospital - Sheffield Teaching Hospitals NHS Foundation Trust Northwick Park Hospital - North West London Hospitals NHS Trust Peterborough City Hospital - Peterborough and Stamford Hospitals NHS Foundation Trust Pilgrim Hospital - United Lincolnshire Hospitals NHS Trust Poole General Hospital - Poole Hospital NHS Foundation Trust Princess Alexandra Hospital - The Princess Alexandra Hospital NHS Trust Princess of Wales Hospital - Abertawe Bro Morgannwg University Health Board (Bwrdd Iechyd Prifysgol Abertawe Bro Morgannwg) Princess Royal University Hospital - South London Healthcare NHS Trust Queen Alexandra Hospital - Portsmouth Hospitals NHS Trust Queen Elizabeth Hospital King's Lynn - The Queen Elizabeth Hospital, King's Lynn NHS Foundation Trust Queen Elizabeth Hospital- Woolwich - South London Healthcare NHS Trust Rotherham Hospital - The Rotherham NHS Foundation Trust Royal Albert Edward Infirmary - Wrightington, Wigan and Leigh NHS Foundation Trust Royal Alexandra Hospital - NHS Greater Glasgow and Clyde Royal Berkshire Hospital - Royal Berkshire NHS Foundation Trust Royal Bolton Hospital - Bolton NHS Foundation Trust Royal Bournemouth General Hospital - The Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust Royal Cornwall Hospital - Royal Cornwall Hospitals NHS Trust Royal Derby Hospital - Derby Hospitals NHS Foundation Trust Royal Devon and Exeter Hospital - Royal Devon and Exeter NHS Foundation Trust Royal Free Hospital - Royal Free London NHS Foundation Trust Royal Gwent Hospital, Newport - Aneurin Bevan Health Board (Bwrdd Iechyd Aneurin Bevan) Royal Infirmary of Edinburgh - NHS Lothian Royal Lancaster Infirmary - University Hospitals of Morecambe Bay NHS Foundation Trust Royal Liverpool University Hospital - Royal Liverpool and Broadgreen University Hospitals NHS Trust Royal London Hospital - Barts Health NHS Trust Royal Oldham Hospital - Pennine Acute Hospitals NHS Trust Royal Preston Hospital - Lancashire Teaching Hospitals NHS Foundation Trust Royal Sussex County Hospital - Brighton and Sussex University Hospitals Trust Royal United Hospital - Royal United Hospital Bath NHS Trust Royal Victoria Hospital - Belfast - Belfast Health and Social Care Trust Royal Victoria Infirmary - The Newcastle Upon Tyne Hospitals NHS Foundation Trust Russells Hall Hospital - The Dudley Group NHS Foundation Trust Salford Royal - Salford Royal NHS Foundation Trust Salisbury District Hospital - Salisbury NHS Foundation Trust Sandwell and West Birmingham Hospitals NHS Trust Scunthorpe General Hospital - Northern Lincolnshire and Goole Hospitals NHS Foundation Trust Shrewsbury and Telford Hospital NHS Trust Solihull Hospital - Heart of England NHS Foundation Trust South Tyneside District Hospital - South Tyneside NHS Foundation Trust South West Acute Hospital - Western Health and Social Care Trust Southampton General Hospital - University Hospital Southampton NHS Foundation Trust Southport District General Hospital - Southport and Ormskirk Hospital NHS Trust St George's Hospital - St George's Healthcare NHS Trust St James' University Hospital - Leeds Teaching Hospitals NHS Trust St John's Hospital, Livingston - NHS Lothian St Mary's Hospital, IOW - Isle of Wight NHS Trust St Richard's Hospital - Western Sussex Hospitals NHS Trust St Thomas' Hospital - Guy's and St Thomas' NHS Foundation Trust St. Peter's Hospital - Ashford and St Peter's Hospitals NHS Trust Stafford Hospital - Mid Staffordshire NHS Foundation Trust Stepping Hill Hospital - Stockport NHS Foundation Trust Sunderland Royal Hospital - City Hospitals Sunderland NHS Foundation Trust Tameside General Hospital - Tameside Hospital NHS Foundation Trust The County Hospital, Wye Valley NHS Trust - Wye Valley NHS Trust The Hillingdon Hospital - The Hillingdon Hospitals NHS Foundation Trust Torbay District General Hospital - South Devon Healthcare NHS Foundation Trust Trafford General Hospital - Central Manchester University Hospitals NHS Foundation Trust Tunbridge Wells Hospital - Maidstone and Tunbridge Wells NHS Trust Ulster Hospital - South Eastern Health and Social Care Trust University College London Hospital - University College London Hospitals NHS Foundation Trust University Hospital Aintree - Aintree University Hospitals NHS Foundation Trust University Hospital Coventry - University Hospitals Coventry and Warwickshire NHS Trust University Hospital Lewisham - The Lewisham Healthcare NHS Trust University Hospital of North Durham - County Durham and Darlington NHS Foundation Trust University Hospital of North Staffordshire - University Hospital Of North Staffordshire NHS Trust University Hospital of Wales - Cardiff and Vale University Health Board (Bwrdd Iechyd Prifysgol Caerdydd a'r Fro) Victoria Hospital, Kirkcaldy - NHS Fife Victoria Infirmary - NHS Greater Glasgow and Clyde Warwick Hospital - South Warwickshire NHS Foundation Trust West Cumberland Hospital - North Cumbria University Hospitals NHS Trust West Suffolk Hospital - West Suffolk NHS Foundation Trust Weston General Hospital - Weston Area Health NHS Trust Wexham Park Hospital - Heatherwood and Wexham Park Hospitals NHS Foundation Trust Whipps Cross Hospital - Barts Health NHS Trust Whiston Hospital - St Helens and Knowsley Hospitals NHS Trust William Harvey Hospital, Ashford - East Kent Hospitals University NHS Foundation Trust Withybush General Hospital - Hywle Dda Health Board (Bwrdd Iechyd Hywel Dda) Worcestershire Royal Hospital - Worcestershire Acute Hospitals NHS Trust Worthing Hospital - Western Sussex Hospitals NHS Trust Wrexham Maelor Hospital - Betsi Cadwaladr University Health Board (Bwrdd Iechyd Prifysgol Betsi Cadwaladr) Wythenshawe Hospital - University Hospital of South Manchester NHS Foundation Trust York Hospital - York Teaching Hospital NHS Foundation Trust Ysbyty Gwynedd - Betsi Cadwaladr University Health Board (Bwrdd Iechyd Prifysgol Betsi Cadwaladr) APPENDIX THREE

Clinical Proforma Questions
Q1.1 Auditor discipline
Options:
Doctor
Nurse
Other health professional
Q2.2 Age

Q2.3 Gender
Options:
Male
Female
Q2.4 Does the patient live in the geographical location covered by this trust?
Options:
Yes
No/Not documented

Q3.1 Is there a statement that the patient is known to have epilepsy?
Options:
Yes
No/Not documented
Q3.2 Does the patient have a written care plan in place?
Options:
Yes
No/Not documented

Q3.3 Is there documentation that the patient has had previous seizures or blackouts?
Options:
Yes
No/Not documented
Q3.3a Was the patient's previous seizure or blackout provoked by alcohol?
Options:
Yes
No
Not documented
Q3.3b Was the patient's previous seizure or blackout provoked by head injury?
Options:
Yes
No
Not documented
Q3.3c Was the patient's previous seizure or blackout provoked by other?
Options:
Yes (if yes – please specify)
No
Not documented
Q3.4 Has the patient attended this Emergency Department as a result of a sezirue in the previous
12 months?
Yes
No
Not documented
Q3.5 On attendance which anti-epileptic drugs was the patient being prescribed?
Options:
Carbamazepine/Tegretol/ Tegretol Retard
Lamotrigine/Lamictal
Levetiracetam/Keppra
Phenytoin/Epanutin
Sodium Valproate/Epilim/Epilim Chrono/Orlept
Acetazolamide/Diamox
Clobazam/Frisium
Clonazepam/Rivotril/ Rivatril
Diazepam/Valium
Eslicarbazepine Acetate/ Zebinix
Ethosuximide/Emeside/ Zarontin
Gabapentin/Neurontin
Lacosamide/Vimpat
Oxcarbazepine/Trileptal
Oxazepam/Serax
Perampanel/Fycompa
Pregabalin/Lyrica
Phenobarbital
Primidone/Mysoline
Retigabine/Trobalt
Rufinamide/Inovelon
Stiripentol/Diacomit
Sulthiame/Ospolot
Tiagabine/Gabatril
Topirimate/Topamax
Vigabatrin/Sabril
Zonisamide/Zonegran
Q3.6a Is it documented that the patient has seen an Epilepsy Specialist Nurse within the previous
12 months?
Options:
Yes
No
Not documented
Q3.6b Is it documented that the patient has seen a GPSI (neurology, epilepsy or neuropsychiatry)
within the previous 12 months?
Options:
Yes
No
Not documented
Q3.6c Is it documented that the patient has seen a learning disability psychiatrist within the
previous 12 months?
Options:
Yes
No
Not documented
Q3.6d Is it documented that the patient has seen a neurologist within the previous 12 months?
Options:
Yes
No
Not documented
Q3.6e Is it documented that the patient has seen a paediatrician within the previous 12 months?
Options:
Yes
No
Not documented
Q3.6f Is it documented that the patient has seen a paediatric neurologist within the previous 12
months?
Options:
Yes
No
Not documented
Q3.6g Is it documented that the patient has seen a neurosurgeon within the previous 12 months?
Options:
Yes
No
Not documented
Q3.7 Is the patient recorded as having a learning disability?
Options:
Yes
No/Not documented
Q4.1 When did the patient arrive in the Emergency Department?
Date


Q4.2 Is there evidence of senior Emergency Department review, i.e. was the patient seen (or was
there a consultation regarding the patient)?
Options:
Yes
No
Not documented
Q4.2a Was this within 4 hours of arrival in the Emergency Department?
Options:
Yes
No
Not documented
Q4.2b Were they seen by a consultant?
Options:
Yes
No
Not documented
Q4.2a Were they seen by a ST4 or above?
Options:
Yes
No
Not documented
Q5.1a Is it documented that diazepam (rectal or IV) was administered prior to arrival at hospital?
Options:
Yes
No
Q5.1a1 Who was the diazepam administered by?
Options:
Family member/carer
GP
Ambulance staff
Other - please specify
Q5.1b Is it documented that midazolam was administered prior to arrival at hospital?
Options:
Yes
No
Q5.1b1 Who was the midazolam administered by?
Options:
Family member/carer
GP
Ambulance staff
Other - please specify
Q5.1c Is it documented that an other drug (oral clobazam, iv lorazepam or paraldehyde) was
administered prior to arrival at hospital?
Options:
Yes
No
Q5.1c1 Who was the other drug administered by?
Options:
Family member/carer
GP
Ambulance staff
Other - please specify
Q5.2 Had the seizure stopped by the time of arrival in the emergency room?
Options:
Yes
No
Unclear
Q5.2a What treatment was given in the emergency room?
Options:
IV diazepam
Rectal diazepam
Buccal midazolam
IV glucose
IV levetiracetam
IV lorazapam
IV phenobarbitol
IV phenytoin
IV thiamine / pabrinex
IV valproate
Rectal or intramuscular paraldehyde
Q6.1 Was the patient fully conscious upon arrival at the Emergency Department?
Options:
Yes
No
Don't know
Q6.2a Was the patient's temperature taken in the Emergency Department?
Options:
Taken
Not taken/Don't know
Q6.2a1 What was the patients' temperature?
Options:
Numeric figure
Q6.2a2 Was their temperature taken within 20 minutes of arrival?
Options:
Yes
No/Don't know
Q6.2b Was the patient's pulse taken in the Emergency Department?
Options:
Taken
Not taken/Don't know
Q6.2c Was the patient's blood pressure taken in the Emergency Department?
Options:
Taken
Not taken/Don't know
Q6.2d Was the patient's oxygen saturation taken in the Emergency Department?
Options:
Taken
Not taken/Don't know
Q6.2e Was the patient's respiratory rate taken in the Emergency Department?
Options:
Taken
Not taken/Don't know
Q6.2f Was the patient's GCS taken in the Emergency Department?
Options:
Taken
Not taken/Don't know
Q6.2f1 What was their GCS score?
Options:
1-15
Q6.3 In the 4 hours following the patient's arrival at the Emergency Department was a neuro obs
chart in place?
Options:
Yes
No/Don't know
Q6.4 Where was the patient transferred or admitted to, directly from the Emergency Department?
Options:
Clinical decision unit
ED observational ward
EMU or equivalent
Intensive Care Unit
Medical decision unit
Medical ward
Neurology ward
Other - please specify
Discharged
Q6.4a For all patients except those who were discharged (or for whom the answer to the previous
question was missing), who took over the care of the patient during admission?
Options:
Neurologist
General physician
Other
Remained under care of Emergency Department
Q6.4b For all patients except those who were discharged (or for whom the answer to the previous
question was missing), how long was the patient admitted for?
Options:
Days
Hours
Q6.4c For patients who were moved to the Intensive Care Unit, what were they treated with?
Options:
Heminevrin
Yes; No; Don't know Yes; No; Don't know Phenobarbitol/phenobarbitone Yes; No; Don't know Propofol Yes; No; Don't know Yes; No; Don't know Other - please specify Yes; No; Don't know
Q6.5 Was an eyewitness to the seizure contacted?
Options:
Yes
No
Don't know
Event unwitnessed
Q6.5a If no to the above, is there a statement that an attempt was made to conatact an
eyewitness?
Options:
Yes
No
Q6.6 Is there documentation that the patient was asked as to whether or not they are a driver?
Options:
Yes
No
Not applicable
Q6.7 Is there documentation of the patient's general alcohol intake?
Options:
Yes
No


Q6.7a How is their drink intake best classified?
Options:
Excessive
Moderate
Low
Q6.8 In the week prior to arrival at the Emergency Department is it documented that the patient
has been on an alcoholic binge?
Options:
Yes
No
Q6.9 Is there documentation that the patient does or does not use illicit drugs?
Options:
Yes
No
Q6.9a Are they a user or a non-user?
Options:
User
Non-user
Q6.9b Which drugs do they use?
Options:
Cannabis
Opiates
Stimulants
Other - please specify
Q6.10 In the 24 hours prior to arrival at the Emergency Department is it documented that the
patients has been using illicit drugs?
Options:
Yes
No
Q6.11a Is there documentation of a fundi examination being undertaken at any time during
attendance at the Emergency Department?
Options:
Yes
No
Q6.11b Is there documentation of a plantar examination being undertaken at any time during
attendance at the Emergency Department?
Options:
Yes
No
Q7.1 Is it documented that at any point in time advice was sought from a neurology / epilepsy
team, or an assessment taken by a neurologist or epilepsy specialist?
Options:
Yes
No
Q7.1a From whom was advice sought?
Options:
Epilepsy Specialist Nurse
Neurologist
Neuropsychiatrist
Neurosurgeon
Paediatrician
Paediatric neurologist
Q8.1a Were antiepileptic drug level investigations undertaken following attendance in the
Emergency Department?
Options:
Yes
No
Don't know
Q8.1b Were CT (head) investigations undertaken following attendance in the Emergency
Department?
Options:
Yes
No
Don't know
Q8.1c Were ECG investigations undertaken following attendance in the Emergency Department?
Options:
Yes
No
Don't know
Q8.1d Were EEG investigations undertaken following attendance in the Emergency Department?
Options:
Yes
No
Don't know
Q8.1e Were glucose levels/BM investigations undertaken following attendance in the Emergency
Department?
Options:
Yes
No
Don't know

Q8.1f Were MRI (head) investigations undertaken following attendance in the Emergency
Department?
Options:
Yes
No
Don't know
Q8.2 Did the patient die during their admission?
Options:
Yes
No
Q8.2a What was the cause of death?
Options:
Free text entries
Q8.3a Was a CT (head) investigation requested as an outpatient following discharge?
Options:
Yes
No
Don't know
Q8.3b Was a EEG investigation requested as an outpatient following discharge?
Options:
Yes
No
Don't know
Q8.3c Was a MRI (head) investigation requested as an outpatient following discharge?
Options:
Yes
No
Don't know
Q8.3d Was a 12 lead ECG investigation requested as an outpatient following discharge?
Options:
Yes
No
Don't know
Q9.1 What was the diagnosis at discharge/death?
Options:
Blackout with seizure markers, not sure if seizure
Syncope/faint
First unprovoked seizure
Unprovoked seizures with history of previous seizures, but no current epilepsy diagnosis
Seizure in someone with established diagnosis of epilepsy
Provoked seizure – alcohol induced
Provoked seizure – drug induced
Provoked seizure – head injury
Provoked seizure – acute stroke
Psychogenic non-epileptic attack / pseudoseizure
Self-discharged
Other - please specify
Not recorded
Q9.2 Was the patient sent home on any antiepileptic drugs?
Options:
Yes
No/Don't know
Q9.2a Which drugs were they sent home on?
Options:
Carbamazepine/Tegretol/ Tegretol Retard
Lamotrigine/Lamictal
Levetiracetam/Keppra
Phenytoin/Epanutin
Sodium Valproate/Epilim/Epilim Chrono/Orlept
Acetazolamide/Diamox
Clobazam/Frisium
Clonazepam/Rivotril/ Rivatril
Diazepam/Valium
Eslicarbazepine Acetate/ Zebinix
Ethosuximide/Emeside/ Zarontin
Gabapentin/Neurontin
Lacosamide/Vimpat
Oxcarbazepine/Trileptal
Oxazepam/Serax
Perampanel/Fycompa
Pregabalin/Lyrica
Phenobarbital
Primidone/Mysoline
Retigabine/Trobalt
Rufinamide/Inovelon
Stiripentol/Diacomit
Sulthiame/Ospolot
Tiagabine/Gabatril
Topirimate/Topamax
Vigabatrin/Sabril
Zonisamide/Zonegran
Q9.3 Was advice about driving to the patient given?
Options:
Yes
No
Don't know
Not applicable (patient does not drive)
Q9.3a Was it that they should stop driving?
Options:
Yes
No
Don't know


Q9.3b Was it that they should inform DVLA?
Options:
Yes
No
Don't know
Q9.4 Was the management of future seizures discussed with the patients or carers?
Options:
Yes
No
Not documented

10.1a Was the patient referred to an epilepsy service or first fit clinic?
Options:
Yes
No
Don't know
10.1b Did the patient attend their appointment?
Options:
Yes
No
Don't know
10.1c What was the date of their appointment?
Options:
Free text
Date not known
10.1d What was their diagnosis?
Options:
Blackout of uncertain cause
Blackout with other cardiac cause
Epilepsy
First epileptic seizure
Non epileptic attack disorder (NEAD)
Syncope/fait/low blood pressure
Other - please specify
10.1e Was the patient referred to an epilepsy specialist nurse?
Options:
Yes
No
Don't know
10.1f Did the patient attend their appointment?
Options:
Yes
No
Don't know
10.1g What was the date of their appointment?
Options:
Free text
Date not known
10.1h What was their diagnosis?
Options:
Blackout of uncertain cause
Blackout with other cardiac cause
Epilepsy
First epileptic seizure
Non epileptic attack disorder (NEAD)
Syncope/fait/low blood pressure
Other - please specify
10.1i Was the patient referred to a GPSI epilepsy?
Options:
Yes
No
Don't know
10.1j Did the patient attend their appointment?
Options:
Yes
No
Don't know
10.1k What was the date of their appointment?
Options:
Free text
Date not known
10.1l What was their diagnosis?
Options:
Blackout of uncertain cause
Blackout with other cardiac cause
Epilepsy
First epileptic seizure
Non epileptic attack disorder (NEAD)
Syncope/fait/low blood pressure
Other - please specify
10.1m Was the patient referred to a learning disability psychiatrist?
Options:
Yes
No
Don't know


10.1n Did the patient attend their appointment?
Options:
Yes
No
Don't know
10.1o What was the date of their appointment?
Options:
Free text
Date not known
10.1p What was their diagnosis?
Options:
Blackout of uncertain cause
Blackout with other cardiac cause
Epilepsy
First epileptic seizure
Non epileptic attack disorder (NEAD)
Syncope/fait/low blood pressure
Other - please specify
10.1q Was the patient referred to a neurologist at this Trust / Health Board?
Options:
Yes
No
Don't know
10.1r Did the patient attend their appointment?
Options:
Yes
No
Don't know
10.1s What was the date of their appointment?
Options:
Free text
Date not known
10.1t What was their diagnosis?
Options:
Blackout of uncertain cause
Blackout with other cardiac cause
Epilepsy
First epileptic seizure
Non epileptic attack disorder (NEAD)
Syncope/fait/low blood pressure
Other - please specify


10.1u Was the patient referred to a neurologist at another Trust / Health Board?
Options:
Yes
No
Don't know
10.1v Did the patient attend their appointment?
Options:
Yes
No
Don't know
10.1w What was the date of their appointment?
Options:
Free text
Date not known
10.1x What was their diagnosis?
Options:
Blackout of uncertain cause
Blackout with other cardiac cause
Epilepsy
First epileptic seizure
Non epileptic attack disorder (NEAD)
Syncope/fait/low blood pressure
Other - please specify
10.1y Was the patient referred to an alcohol/drug liaison service?
Options:
Yes
No
Don't know
10.1z Did the patient attend their appointment?
Options:
Yes
No
Don't know
10.1aa What was the date of their appointment?
Options:
Free text
Date not known


10.1bb What was their diagnosis?
Options:
Blackout of uncertain cause
Blackout with other cardiac cause
Epilepsy
First epileptic seizure
Non epileptic attack disorder (NEAD)
Syncope/fait/low blood pressure
Other - please specify
Q10.2 Was an A&E discharge letter provided to the patient's GP following their attendance at ED?
Options:
Yes
No
Don't know
Q10.2a Did the letter ask their GP to arrange onward referral?
Options:
Yes
No
Don't know
Institutional Proforma Questions
Q1.1a Does your Trust have a written policy for management of patients with first seizures?
Options:
Yes
No
Under development/intended
Q1.1b Does your Trust have a written policy for management of status epilepticus?
Options:
Yes
No
Under development/intended
Q1.1c Does your Trust have a written policy for the pathway for onward referral of patients
presenting with seizures?
Options:
Yes
No
Under development/intended
Q1.2 If a patient's seizure has stopped but the patient needs to be observed or admitted - where
would they go to from the ED?
Options:
Observation ward
Medial admissions/assessment unit
General ward
Neurology ward
ITU
Other - please specify
Q2.1 Does your trust have a neurosurgeon on the staff?
Options:
Yes
No
Q2.2 Do you have a neurology ward?
Options:
Yes
No
Q2.2a If Yes - Does it take admissions from ED?
Options:
Yes
No


Q2.3 How many general neurology clinics are conducted per week?
Options:
None
1
2
3
4
More
Q2.4 How many dedicated epilepsy clinics (i.e. a clinic that only sees epilepsy-related problems)
are conducted per week?
Options:
None
1
2
3
4
More
Q2.5 Do you have a neurology consultancy service available on the wards?
Options:
Yes
No

Q2.5a If yes; for how many days is that available?
Options:
1-2
3-5
Q2.6 Does your Trust have access to an Epilepsy Specialist Nurse?
Options:
Yes
No
Q2.6a If Yes - How many full time Epilepsy Specialist Nurses are there?
Options:
Free text

Q2.6b If Yes - How many part time Epilepsy Specialist Nurses are there?
Options:
Free text

Q2.6c What is their availability, i.e. how soon can an appointment be arranged?
Options:
0-2 weeks
3-4 weeks
5-6 weeks
7+ weeks
Q2.6d Who employs the Epilepsy Specialist Nurse(s)?
Options:
The Trust
The CCG
Don't know

Q2.7 Does your Trust have access to a Neurology Specialist Nurse (i.e. nurses who cover
neurological conditions but are not disease-specific)?
Options:
Yes
No

Q2.7a how many full time Neurology Specialist Nurses are there?
Options:
Free text

Q2.7b how many part time Neurology Specialist Nurses are there?
Options:
Free text

Q2.8 Are you able to refer epilepsy to a psychology service?
Options:
Yes
No
Q2.9 Is it standard practice to provide patients who have experienced a seizure with a leaflet that
gives advice on issues such as seizure management and driving?
Options:
Yes
No

Q3.1 Do you have access to an MRI scanner?
Options:
Yes
No

Q3.1a If yes, what is the waiting time for a routine MRI scan?
Options:
0-2 weeks
3-4 weeks
5-6 weeks
7+ weeks
Q3.2a Do you have access to routine EEGs; - From this Site?
Options:
Yes
No


Q3.2b Do you have access to routine EEGs; - From another Site?
Options:
Yes
No
Q4.3 Do you consider yourself a tertiary neurology centre??
Options:
Yes
No
Q3.3a If no, what is the name of your nearest tertiary neurology centre?
Options:
Free text
Q3.3b How far away is it?
Options:
0-20 miles
20-50 miles
More
APPENDIX FOUR
Localization-related (focal)(partial) idiopathic epilepsy and epileptic syndromes with seizures of localized onset Localization-related (focal)(partial) symptomatic epilepsy and epileptic syndromes with simple partial seizures Localization-related (focal)(partial) symptomatic epilepsy and epileptic syndromes with complex partial seizures Generalized idiopathic epilepsy and epileptic syndromes Other generalized epilepsy and epileptic syndromes Special epileptic syndromes Grand mal seizures, unspecified (with or without petit mal) Petit mal, unspecified, without grand mal seizures Epilepsy, unspecified Grand mal status epilepticus Petit mal status epilepticus Complex partial status epilepticus Other status epilepticus Status epilepticus, unspecified Post traumatic seizures Unspecified convulsions APPENDIX FIVE
It was established that NASH 2 could assist with reporting on the following NICE Quality Statements for Epilepsy (Adults). Statement 1: Adults presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation. Statement 2: Adults having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested. Statement 4: Adults with epilepsy have an agreed and comprehensive written epilepsy care plan. Statement 5: Adults with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews. Statement 6: Adults with a history of prolonged or repeated seizures have an agreed written emergency care plan. Statement 7: Adults who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral. Statement 8: Adults with epilepsy who have medical or lifestyle issues that need review are referred to specialist epilepsy services.

Source: http://www.nashstudy.org.uk/Newsletters/St%20Elsewhere's%20Clinical%20Report%20NASH%202.pdf