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INVESTIGATION OF DEATHS IN EPILEPSYAudit ToolsContents ListAUDIT OF PRIMARY AND SECONDARY CARE1 Primary Care Audit Tool 1: non-referred patients2 Primarudit Tool 2: ref3 Secondary Care Audit ToolAUDIT OF THE INVESTIGATION OF DEATH4 Pathology Audit Tool 5 Doctor Certified Deaths Audit Tool SERVICE QUESTIONNAIRES6 Service Questionnaire: Pathologists7 Ser Primary Care8 Ser Secondary CareNational Sentinel Clinical Audit - Epilepsy Deaths1 Primary Care Casenotes Audit Tool 1For use where there is no secondary care or the GP did not referCase No Age Sex Date of death (for reference only)1 What was the date of the first possible/putative seizure? If the epilepsey was diagnosed in the last five years, continue below. If not, go to Q152 Is there evidence that the patient contacted any branch of the health service about that episode? Yes NoIf yes, continue below. If no, go to Q53 If yes, which branch of the health service was first contacted?a GP b A&Ec NHS Direct d Ambulance Service e Other (please state)f State the date of that first contact4 How long, in days, between f above and the date the patient saw a GP about this episode?5 When was the patient first seen by the GP after the first possible/putative seizure? 6 How many seizures had the patient experienced before being seen for the first time by the GP?7 Has the GP written a description of a seizure in the notes or in a ...
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INVESTIGATION OF DEATHS IN EPILEPSYAudit Tools
Contents List
AUDIT OF PRIMARY AND SECONDARY CARE
1Primary Care Audit Tool 1: non-referred patients2Primary Care Audit Tool 2: referred patients3Secondary Care Audit Tool
AUDIT OF THE INVESTIGATION OF DEATH
4Pathology Audit Tool5Doctor Certified Deaths Audit Tool
SERVICE QUESTIONNAIRES
6Service Questionnaire: Pathologists7Service Questionnaire: Primary Care8Service Questionnaire: Secondary Care
10If yes, on what evidence was that diagnosis made?
9Is there evidence that the GP made the diagnosis of epilepsy?
No
Yes
8State the reason why the GP did not refer the patient to a specialist
Yes
7Has the GP written a description of a seizure in the notes or in a letter?If yes, summarize the account on paper or tape
No
Yes
No
Case No Age Sex Date of death(for reference only)
1What was the date of the first possible/putative seizure?If the epilepsey was diagnosed in the last five years, continue below. If not, go to Q152Is there evidence that the patient contacted any branch of the health service about that episode?If yes, continue below. If no, go to Q53If yes, which branch of the health service was first contacted?aGPbA&EcNHS DirectdAmbulance ServiceeOther (please state)fState the date of that first contact4How long, in days, betweenfabove and the date the patient saw a GP about this episode?
5When was the patient first seen by the GP after the first possible/putative seizure?
6How many seizures had the patient experienced before being seen for the first time by the GP?
1
1
For use where there is no secondary care or the GP did not refer
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ABOUT INVESTIGATIONS WHICH AID DIAGNOSIS11Are there any investigations initiated by the GP to clarify the differential diagnosis of epilepsy?If yes, complete table A, then continue below. If no, go to Q1312Is there evidence that the patient was awaiting any GP initiated investigations at time of death?13Is there in the notes a clearly stated cause of the epilepsy (e.g. antenatal or birth-relatedbrain injury, head injury, meningitis, brain tumour, stroke, genetic or chromosomal disorder)?If yes, continue below. If no, go to Q1514What was the cause?
MANAGING & REVIEWING THE EPILEPSY15In the last year was the seizure frequency documented in the GPs notes or correspondence?If yes, continue below. If no, go to Q1716Record the seizure frequency as it is described by the GP
17Is there any evidence of increase in seizure frequency in the 12 months preceding death?18Give details, as contained in the notes, ofaSeizure typebTrigger factors for epilepsy19Is there a management plan in the GPs own notes during the 5 years prior to death?20Is there evidence of other specialist advice being sought by the GP?If yes, record who was consulted and what the advice was
21Who reviewed the patient’s epilepsy at the last review prior to death?(Tick any that apply)aGPbSpecialist nursecPractice nursedNo review recordedeDate of last review(if applicable)22Did the deceased see any GP in the 28 days prior to death?If yes, continue below. If no, go to Q2423If yes, when and for what?
YesYesYes
Yes
Yes
YesYes
Yes
NoNoNo
No
No
NoNo
No
24Is there evidence that the patient was receiving any of the therapies listed below?:aAlternative therapistbBiofeedbackcDietary restrictiondPsychological therapieseOther - please statefNone of these
ABOUT MEDICATION25Is there evidence that the GP had in the last five years checked blood for therapeutic AED levels?If yes, complete table B, inserting the most recent test only for all AEDs done.Complete Table C26Does the repeat prescription record indicate good compliance?(Within seven days either way of expiry of last prescription)State E, T or L or Unknown. Calculate this as follows:Find the date of the prescription before last.Note how many days supply of tablets had been prescribed.Find the date of the last prescription.Work out if the number of days between prescriptions is lesser,the same as or greater than the number of days tabletspreviously prescribed. If it is lesser, state E. If it is thesame, state T, or if it is greater state L.27Is there any record of non-compliance with medication in the GPs own notes?28If yes, what action was taken as a result?
29List any other medication commenced over the last year stating doses and commencement date.Include the date of last prescription for each item.
ABOUT OTHER HEALTH PROBLEMS30Is there evidence in the notes of any of the health problems below?(tick any that apply)aLearning disabilitybDrug misusecAlcohol misusedNone of these31Was the patient pregnant?
ABOUT INFORMATION GIVEN32Is there documented evidence in the notes aboutwhether the deceased and/or family had been providedwith information about epilepsy?If yes dictate details of information given and to whom. If no, go to Q34.
Yes
Yes No
Yes No
No N/A
Yes No
33Who provided this information?aGPbPractice nursecSpecialist nursedOther - please state
34Is there evidence of discussion of hazards of seizures?
35Is there any evidence that there had been discussion about epilepsy causing death?
36Is there evidence that there has been contact by the GP to support the family after the death?
36aIs there evidence of an invitation by the GP to the family to meet to discuss the death?
37Is there evidence that the GP was present at the terminal event?If yes, continue below. If not, go to Q38a
38If yes, record the description of what happened and any treatment given.
WHERE THE GP CERTIFIED THE DEATH38aIs there any evidence that the certifying GP has reported the death to the Coroner?If yes, record what is written in the medical record
38bIs there anything in the notes describing the cause and/or circumstances of death?If yes, record what is written in the medical record
Table A – tests done by GP to clarify the differential diagnosis of epilepsy
Type of test
Date ordered
Date done
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
No
No
No
No
Table B - Record only the last result for each AED prescribed at the time of death,and do not go back more than five years
AED name
Date blood Reason fortaken testing
Date received Date tested Date reported Date result Action takenin lab received by GP
Table C – List of antiepileptic drugs the patient was prescribed at the time of death
AED Name
Dose
Dosage
Date started
Reason started
45Has the GP made a description of a seizure in the notes or in a letter?If yes, summarize the account on paper or tape
No
43What was the date the patient was first seen by the GP after the first possible/putative seizure?
44How many seizures had the patient experienced before being seen for the first time by the GP?
Case No Age Sex Date of death(for reference only)
39What was the date of the first possible/putative seizure?If the epilepsy was diagnosed inlast five years, continue below. If not, go to Q5840Is there evidence that the patient contacted any branch of the health service about that episode?If yes, continue below. If no, go to Q4341If yes, which branch of the health service was first contacted?aGPbA&EcNHS DirectdAmbulance ServiceeOther(please state)fState the date of that first contact42How long, in days, betweenfabove and the date the patient saw a GP about this episode?
49Was the referral by:aPhone?bFax?cLetter?dOther(please state)
ABOUT REFERRING THE PATIENT46What was the date of the referral?47What is the time difference between Q43 and Q46?CALCULATE BY FORMULA
Yes
Yes
No
toTuAid
2
48To which speciality was the referral made?(tick one or more)aNeurologybGeneral medicinecMedicine for the elderlydPaediatricsePaediatric neurologyfPsychiatrygLearning disabilityhA&EiOther(please state)
For use where the GP referred a patient to secondary care
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50What was the date of the first appointment with the specialist?51How long from first consultation with the GP about the first seizure to appointment withspecialist?CALCULATED BY FORMULA52Is there evidence that a more urgent referral was requested?53Had the patient been re-referred to a speciality or referred to a new speciality because of epilepsyIf yes, continue below. If no, go to Q5854What was the date of re-referral?55What was the date of the subsequent appointment?56What is the time gap in days between Q43 & Q55?CALCULATE BY FORMULA
57Why was the patient re-referred?(tick one or more)aConsider stopping anti-epileptic medicationbChange in seizure frequency or pattern?cFor reassessment of AEDs due to side effects?dChange in life event e.g. pregnancy, contraceptioneReconsider diagnosisfSecond opiniongOther -please state58Is there a letter or a note of a phone call from the specialist in which the specialistconfirms the diagnosis of epilepsy?If yes, continue below. If no, go to Q6059If yes, what is the date on that letter or of that call?Now go to Q60
ABOUT INVESTIGATIONS WHICH AID DIAGNOSIS60Are there any investigations initiated by the GP to aid the diagnosis of epilepsy?If yes, complete table A, then continue below. If no, go to Q6261Is there evidence that the patient was awaiting any GP initiated investigations at time of death?62Who reviewed the patient’s epilepsy at the last review prior to death?(Tick any that apply)aSpecialistbGPcSpecialist NursedPractice NurseeNo review recorded63What was the date of the last review (if one was carried out)?64Did the deceased see any GP in the 28 days prior to death?If yes, continue below. If no, go to Q6665If yes for what?
YesYes
Yes
YesYes
Yes
NoNo
No
NoNo
No
ABOUT MEDICATION66Is there evidence that in the last five years the GP hadchecked blood for therapeutic AED levels?If yes, complete table B, inserting the most recent test only for all AEDs done.Complete table C67Does the repeat prescription record indicate good compliance?(Within seven days either way of expiry of last prescription)State E,T,L or Unknown. Calculate this as follows:Find the date of the prescription before last.Note how many days supply of tablets had been prescribed.Find the date of the last prescription.Work out if the number of days between prescriptions is lesser,the same as or greatert than the number of days tabletspreviously prescribed. If it is lesser, state E. If it is thesame, state T, or if it is greater state L.68Is there any record of non-compliance with medication in the GPs own notes?69List any other medication commenced over the last year stating doses and commencement date.Include the date of last prescription for each item.
ABOUT OTHER HEALTH PROBLEMS70Is there evidence in the notes of any of the health problems below?(tick any that apply)aIschaemic Heart DiseasebRespiratory conditionscLearning disabilitydDrug misuseeAlcohol misusefTraumagPhysical disabilityhNeurological illnessiNone of the aboveIf yes, go to Q71. If no, go to Q7271Has the GP told the specialist about all items ticked in 70 abovebefore the referral appointment takes place?72Is there evidence in the notes of any of the following coronary risk factors?aSmokingbHaving a BMI of 28 or morecDiabetesdA BP of 150/90 or a statement of hypertensioneFamily history of stroke or heart attack under age of 60 yearsgNone of the above73Was the patient pregnant?If yes, continue below. If not, go to Q7674Is there evidence that the obstetrician had been told of the patient’s epilepsy?75Is there evidence of a management plan during pregnancy?76Is there evidence that the patient was receiving any of the therapies listed below:aVagal Nerve StimulationbAlternative therapistcBiofeedbackdDietary restrictionePsychological therapiesfOther - please stategNone of the above
Yes No
Yes No
Yes No
Yes No N/AYes NoYes No
77Is there any evidence in the last 3 months preceding deathof a change in seizures, trigger factors or note of life event ?If yes, continue below. If no, go to Q7978If yes, give details:
ABOUT INFORMATION GIVEN79Is there documented evidence in the notes about whether the deceased and/or family hadbeen provided with information about epilepsy?If yes dictate details of information given and to whom. If no, go to Q81
80Who provided this information?aGPbSpecialistcPractice nursedSpecialist nurseeOther - please state81Is there any evidence that there had been discussion between the GP and thepatient/relative/carer about epilepsycausing death?82Is there evidence of a letter from the GP to the family after the death?83Is there evidence of an invitation by the GP to the family to meet to discuss the death?84Is there evidence that the GP was present at the terminal event?If yes, continue below. If not, go to Q85a85If yes, record the description of what happened and any treatment given.
WHERE THE GP CERTIFIED THE DEATH85aIs there any evidence that the certifying GP has reported the death to the Coroner?If yes, record what is written in the medical record
85bIs there anything in the notes describing the cause and/or circumstances of death?If yes, record what is written in the medical record
Yes
Yes
YesYesYesYes
Yes
Yes
No
No
NoNoNoNo
No
No
Table A – tests done by GP to clarify the differential diagnosis of epilepsy
Type of test
Date ordered
Table B - Record only the last result for each AED prescribed at the time of death,and do not go back more than five years
AED name
Date blood Reason fortaken testing
Date done
Date received Date tested Date reported Date result Action takenin lab received by GP
