2. Driving and Epilepsy – The IBE Perspective Driving and Epilepsy – The IBE Perspective Mike Glynn, IBE President 12 th Epilepsy and Society European Conference Mike Glynn, IBE President 12 th Epilepsy and Society European Conference Porto August 2010 Porto August 2010

3. Epilepsy and Driving DEADLINE FOR EUROPEAN UNION MEMBER STATES TO IMPLEMENT COMMISSION DIRECTIVE 2009/112/EC 29 TH August 2010 `

4. Epilepsy and Driving in Europe E C Directive Group 1 1 st Seizure 1 st Seizure Epilepsy Epilepsy Provoked seizure Provoked seizure Sleep seizures Sleep seizures Other seizures wihout influence on driving ability Other seizures wihout influence on driving ability Other loss of consciousness Other loss of consciousness Seizure because of change of medication Seizure because of change of medication 6 months 6 months 12 months 12 months Varies Varies 12 months + no other seizures 12 months + no other seizures Varies Varies 3 mo 3 mo

5. Epilepsy and Driving in Europe E C Directive Group 2 First unprovoked seizure The applicant who has had a first unprovoked epileptic seizure can be declared able to drive once 5 years freedom of further seizures has been achieved without the aid of anti-epileptic drugs, if there has been an appropriate neurological assessment National authorities may allow drivers with recognised good prognostic indicators to drive sooner. The applicant who has had a first unprovoked epileptic seizure can be declared able to drive once 5 years freedom of further seizures has been achieved without the aid of anti-epileptic drugs, if there has been an appropriate neurological assessment National authorities may allow drivers with recognised good prognostic indicators to drive sooner.Epilepsy 10 years freedom of further seizures has been achieved without the aid of anti-epileptic drugs. National authorities may allow drivers with recognised good prognostic indicators to drive sooner. 10 years freedom of further seizures has been achieved without the aid of anti-epileptic drugs. National authorities may allow drivers with recognised good prognostic indicators to drive sooner.

6. Driving is a privilege Driving is a privilege

7. Epilepsy and Driving This (Driving) is undoubtedly one of the most emotionally charged issues for individuals with epilepsy. Until relatively recently most countries had extremely onerous restrictions on individuals with seizures. Some even took away driving privileges for life. This (Driving) is undoubtedly one of the most emotionally charged issues for individuals with epilepsy. Until relatively recently most countries had extremely onerous restrictions on individuals with seizures. Some even took away driving privileges for life. Berg, A 2004 IBE Commission on Epilepsy, Risks and Insurability Berg, A 2004 IBE Commission on Epilepsy, Risks and Insurability

8. Epilepsy and Driving Epilepsy and Driving Driving Directive will needs pressure from IBE member in each country Driving Directive will needs pressure from IBE member in each country Use MEPs –great issue for them, European concern but with local perspective Use MEPs –great issue for them, European concern but with local perspective Put pressure on National Governments, politicians – use neighbouring countries situation (if better!) Put pressure on National Governments, politicians – use neighbouring countries situation (if better!)

9. Epilepsy and Driving Epilepsy and Driving Use Media – they love Driving issue: Use Media – they love Driving issue: good human interest story good human interest story They can identify with losing license They can identify with losing license

10. Epilepsy and Driving Epilepsy and Driving Diabetes and Eyesight charities have the same issue – examine the possibilities of working with them Diabetes and Eyesight charities have the same issue – examine the possibilities of working with them

11. Epilepsy and Driving Epilepsy and Driving Driving is a great issue for IBE members: Driving is a great issue for IBE members: This is your issue –not a medical or legislative issue This is your issue –not a medical or legislative issue Recognition by Government of PWEs driving privileges means they have other rights too Recognition by Government of PWEs driving privileges means they have other rights too Can lead to Employment, Education, Social Entitlements and other human rights too Can lead to Employment, Education, Social Entitlements and other human rights too

12. Epilepsy and Driving Reasons why PWE are excluded from or unfairly limited in driving privileges Fear / Stigma / Cultural / Religious Fear / Stigma / Cultural / Religious Adherence / Compliance problems Adherence / Compliance problems Economic Reasons Economic Reasons Doctor reporting issues with Authorities Doctor reporting issues with Authorities Lack of representation for PWE Lack of representation for PWE

13. Group 1 vehicles (private cars etc.) Epilepsy - USA Huge variation from State to State Huge variation from State to State Ranges from 3 months to 18 months seizure- free periods Ranges from 3 months to 18 months seizure- free periods Many States have ‘no set seizure-free period’ Many States have ‘no set seizure-free period’ 5 States impose reporting requirement on Physicians 5 States impose reporting requirement on Physicians With minor exceptions, none of the 52 States are exactly the same With minor exceptions, none of the 52 States are exactly the same

14. Group 1 vehicles (private cars etc.) Epilepsy – Asia Oceanic region/s Japan – 2 years (with certification) Japan – 2 years (with certification) Australia – 6 months to 2 years Australia – 6 months to 2 years New Zealand – 1 year New Zealand – 1 year Thailand – unclear Thailand – unclear Malaysia – In practice may be determined Malaysia – In practice may be determined by Physician by Physician India, Singapore, Taiwan – complete ban India, Singapore, Taiwan – complete ban Other countries – no information Other countries – no information

15. Epilepsy and Driving Major changes in European Union regulations which must be introduced before September 2010 can be traced directly to: Major changes in European Union regulations which must be introduced before September 2010 can be traced directly to: The IBE Driving Workshops held in 1995 & 1996 in Brussels The IBE Driving Workshops held in 1995 & 1996 in Brussels

16. IBE Task Force on Driving & Epilepsy Members: Members: Mike Glynn Ireland Chair Mike Glynn Ireland Chair Dr. Marshal Hsai Song Taiwan Dr. Marshal Hsai Song Taiwan Dr. Eric Schmedding Belgium Dr. Eric Schmedding Belgium Orla Gilroy Hongkong Orla Gilroy Hongkong Dr. Silvia Kochen Argentina Dr. Silvia Kochen Argentina Dr.Andrew Pan Singapore Dr.Andrew Pan Singapore

17. Epilepsy and Driving European Countries by GDP ranking European Countries by GDP ranking Countries with Driving Regs for Epilepsy Countries with no Driving Regs for Epilepsy Countries with Driving Regs for Epilepsy Countries with no Driving Regs for Epilepsy 1 Luxembourg 69,800 31 Slovenia 21,808 1 Luxembourg 69,800 31 Slovenia 21,808 4 Ireland 40,610 33 Cyprus 21,177 4 Ireland 40,610 33 Cyprus 21,177 6 Denmark 34,740 41 Hungary 16,823 6 Denmark 34,740 41 Hungary 16,823 9 Austria 33,432 43 Estonia 16,414 9 Austria 33,432 43 Estonia 16,414 12 Belgium 31,244 45 Slovakia 16,041 12 Belgium 31,244 45 Slovakia 16,041 13 Finland 31,208 49 Lithuania 14,158 13 Finland 31,208 49 Lithuania 14,158 15 Netherlands 30,862 51 Poland 12,994 15 Netherlands 30,862 51 Poland 12,994 17 Germany 30,579 53 Latvia 12,666 17 Germany 30,579 53 Latvia 12,666 8 United Kingdom 30,436 66 Bulgaria 9,223 8 United Kingdom 30,436 66 Bulgaria 9,223 19 Sweden 29,926 67 Romania 8,785 19 Sweden 29,926 67 Romania 8,785 20 France 29,187 20 France 29,187 21 Italy 28,534 21 Italy 28,534 25 Spain 26,320 25 Spain 26,320 30 Greece 22,392 In negotiation 30 Greece 22,392 In negotiation 37 Portugal 19,335 37 Portugal 19,335 36 Malta 19,739 36 Malta 19,739 38 Czech Republic 18,341 75 Turkey 7,950 38 Czech Republic 18,341 75 Turkey 7,950 States with special EU relationship States with special EU relationship 2 Norway 42,364 2 Norway 42,364 5 Iceland 35,115 5 Iceland 35,115 10 Switzerland 32,571 10 Switzerland 32,571

18. Epilepsy and Driving Countries with Driving Regulations for Epilepsy Countries with Driving Regulations for Epilepsy All have national member of IBE run by lay professionals All have national member of IBE run by lay professionals 1 Luxembourg 69,800 1 Luxembourg 69,800 4 Ireland 40,610 4 Ireland 40,610 6 Denmark 34,740 6 Denmark 34,740 9 Austria 33,432 9 Austria 33,432 12 Belgium 31,244 12 Belgium 31,244 13 Finland 31,208 13 Finland 31,208 15 Netherlands 30,862 15 Netherlands 30,862 17 Germany 30,579 17 Germany 30,579 18 United Kingdom 30,436 18 United Kingdom 30,436 19 Sweden 29,926 19 Sweden 29,926 20 France 29,187 20 France 29,187 21 Italy 28,534 21 Italy 28,534 25 Spain 26,320 25 Spain 26,320 30 Greece 22,392 30 Greece 22,392 37 Portugal 19,335 37 Portugal 19,335 36 Malta 19,739 36 Malta 19,739 38 Czech Republic 18,341 38 Czech Republic 18,341 2 Norway 42,364 2 Norway 42,364 5 Iceland 35,115 5 Iceland 35,115 10 Switzerland 32,571 10 Switzerland 32,571

19. Epilepsy and driving in Europe Second Working Group on Epilepsy and Driving of the European Union April 2005

20. Epilepsy & Driving Members of the Working Group Mr Joël Valmain Mr Joël Valmain Dr Jaume Burcet Darde Dr Jaume Burcet Darde Dr Bernhard Gappmaier Dr Bernhard Gappmaier Prof Guenter Kraemer Prof Guenter Kraemer Dr John Kirker Dr John Kirker Dr Mikael Ojala Dr Mikael Ojala Dr Nicole Markschies Dr Nicole Markschies Dr Eric Schmedding Dr Eric Schmedding Dr Anders Sundqvist Dr Anders Sundqvist Dr Elena Valdès Dr Elena Valdès Prof Hervé Vespigniani, Prof Hervé Vespigniani, Dr Graham Wetherall Dr Graham Wetherall Dr Jörgen Worm-Petersen Dr Jörgen Worm-Petersen Traffic Bureau EU Traffic Bureau EU Spain Spain Austria Austria Ireland Ireland Germany Germany Finland Finland Belgium Belgium Sweden Sweden Spain Spain France France United Kingdom United Kingdom Denmark Denmark

21. Actual v Proposed S-Free period GROUP 1 First seizure First seizure

22. Actual v Proposed S-Free period GROUP 1 Epilepsy

23. Actual v Proposed S-Free period Actual v Proposed S-Free period GROUP 2 GROUP 2 First seizure First seizure

24. Actual v Proposed S-Free period GROUP 2 Epilepsy

25. Epilepsy and Driving in Europe Schmedding et al Recommendations Group 2 Final report; 3 April 2005 32 Final report; 3 April 2005 32 Table 9 Proposed guidelines for GROUP 2 Table 9 Proposed guidelines for GROUP 2 Clinical situation Advise Clinical situation Advise General conditions for all Group 2 drivers The applicant should be without anti-epileptic medication for the required period of seizure freedom; General conditions for all Group 2 drivers The applicant should be without anti-epileptic medication for the required period of seizure freedom; There has been a appropriate medical follow-up; There has been a appropriate medical follow-up; On extensive neurological investigation no relevant cerebral pathology has been established and there is no epileptiform activity on the EEG. On extensive neurological investigation no relevant cerebral pathology has been established and there is no epileptiform activity on the EEG. The subject can only be declared able to drive subject to neurological opinion. The subject can only be declared able to drive subject to neurological opinion. The risk of having a seizure should be 2% per annum or less. The risk of having a seizure should be 2% per annum or less. - Provoked seizure, because of a recognisable and avoidable provoking factor The applicant that has had a provoked epileptic seizure because of a recognisable provoking factor that is unlikely to recur at the wheel can be declared able to drive on an individual basis, subject to neurological opinion. - Provoked seizure, because of a recognisable and avoidable provoking factor The applicant that has had a provoked epileptic seizure because of a recognisable provoking factor that is unlikely to recur at the wheel can be declared able to drive on an individual basis, subject to neurological opinion. An EEG and an appropriate neurological assessment should be performed after the acute episode. An EEG and an appropriate neurological assessment should be performed after the acute episode. Someone with a structural intracerebral lesion who has increased risk of seizures should not be able to drive vehicles of group 2 until the epilepsy risk has fallen to at least 2% per annum. Someone with a structural intracerebral lesion who has increased risk of seizures should not be able to drive vehicles of group 2 until the epilepsy risk has fallen to at least 2% per annum. NOTE: The assessment should be if appropriate in accordance with other relevant sections of Annex III. (e.g. in the case of alcohol) NOTE: The assessment should be if appropriate in accordance with other relevant sections of Annex III. (e.g. in the case of alcohol) First unprovoked seizure The applicant who has had a first unprovoked epileptic seizure can be declared able to drive once 5 years freedom of further seizures has been achieved without the aid of anti- epileptic drugs, if there has been an appropriate neurological assessment First unprovoked seizure The applicant who has had a first unprovoked epileptic seizure can be declared able to drive once 5 years freedom of further seizures has been achieved without the aid of anti- epileptic drugs, if there has been an appropriate neurological assessment National authorities may allow drivers with recognised good prognostic indicators to drive sooner. National authorities may allow drivers with recognised good prognostic indicators to drive sooner. Other loss of consciousness The loss of consciousness should be assessed according to the risk of recurrence while driving. Other loss of consciousness The loss of consciousness should be assessed according to the risk of recurrence while driving. The risk of recurrence should be 2% per annum or less. The risk of recurrence should be 2% per annum or less. Epilepsy 10 years freedom of further seizures has been achieved without the aid of anti-epileptic drugs. Epilepsy 10 years freedom of further seizures has been achieved without the aid of anti-epileptic drugs. National authorities may allow drivers with recognised good prognostic indicators to drive sooner. National authorities may allow drivers with recognised good prognostic indicators to drive sooner. Special situations Driving ban Special situations Driving ban Prophylactic ban Certain disorders have an increased risk of seizures, even if seizures have not yet occurred. In such a situation an assessment should be done: the risk of having a seizure should be 2% per annum or less. Prophylactic ban Certain disorders have an increased risk of seizures, even if seizures have not yet occurred. In such a situation an assessment should be done: the risk of having a seizure should be 2% per annum or less. 32 32

26. Epilepsy and Driving: The chance of having an accident while driving (with frequent seizures) 367 pre-surgical patients: do you drive? 367 pre-surgical patients: do you drive? 30 % admit this, most of them drive at least weekly 30 % admit this, most of them drive at least weekly 40 % (!) at some point had a seizure while driving 40 % (!) at some point had a seizure while driving 70 % of them (27% of the whole group) had, at one point in time, one or more accidents while driving. Of these 32% had physical damage himself; 20% caused physical damage in others 70 % of them (27% of the whole group) had, at one point in time, one or more accidents while driving. Of these 32% had physical damage himself; 20% caused physical damage in others Berg A et al: “Driving in adults with refractory localisation-related epilepsy” Neurology 2000; 54: 625-630

27. Epilepsy and Driving Epilepsy and Driving Causes of a “provoked seizure” Causes of a “provoked seizure” May be avoidable (depending on the circumstances): May be avoidable (depending on the circumstances): –Medication: Antipsychotics, antidepressives, anesthetics, antibiotics, theophylline, cardiovascular drugs Antipsychotics, antidepressives, anesthetics, antibiotics, theophylline, cardiovascular drugs –Metabolic Hypo- Mg, Ca, Na, glucose; Hyper- Na, glucose Hypo- Mg, Ca, Na, glucose; Hyper- Na, glucose –Traumatic; infection; stroke Not (sufficiently) avoidable: Not (sufficiently) avoidable: –Alcohol and alcohol withdrawal –Drugs –Fever –Sleep deprivation, (sleep), arousal –Stress –Reflex epilepsies

28. Epilepsy & Driving Compulsory notification Compulsory notification of the authorities by the treating physician leads to underreporting of seizures. (up to 90%) This interferes with the doctor-patient relationship and with treatment. Moreover, it is not effective: only 25% of people breaking the law are traced. (Canada) Compulsory notification of the authorities by the treating physician leads to underreporting of seizures. (up to 90%) This interferes with the doctor-patient relationship and with treatment. Moreover, it is not effective: only 25% of people breaking the law are traced. (Canada) It is strongly advised against by: It is strongly advised against by:  The First Working Group on Epilepsy and Driving 1996  The Second Working Group on Epilepsy and Driving 2004 An advisory body to the Driving Licence Committee of the European Union  A consensus of the Am. Acad. Neurology (AAN), the Am. Epilepsy Society (AES) and the Epilepsy Foundation (USA) 1994

29. Driving & Epilepsy Concealment of seizures The number of patients who conceal their seizures from their treating physician increases if this physician has the power to take their licence away The number of patients who conceal their seizures from their treating physician increases if this physician has the power to take their licence away –In an American study 4% of patients concealed their seizures for the treating physician. This increased to 28% where the doctors had to report to the authorities

30. Epilepsy and Driving-Insurance ` Epilepsy and Driving-Insurance `

31. Epilepsy and Driving Motor Insurance ` -Provided PWE are driving under their country’s regulations they should have equal access to Insurance. Epilepsy and Driving Motor Insurance ` -Provided PWE are driving under their country’s regulations they should have equal access to Insurance.

32. Epilepsy and Driving ` Epilepsy and Driving ` Motor Insurance ` -There have been problems in some countries but these have been solved by the IBE member Assoc. e.g. a) Brainwave and ILAE medics established a relationship with the Irish Insurance Federation and can go directly to them b) Epilepsy Action in UK set up its own Insurance plan for PWE. IBE Driving Task Force can help any member assoc. With Insurance problems.

33. Safe Driving

34. Epilepsy and Driving Epilepsy and Driving http://europa.eu.int/comm/ transport/home/driving licence/index_en.htmlicence/index_en.htm. licence/index_en.htm DRIVE ON !