1. / MIGRAINE IN PRIMARY CARE ADVISORS Migraine Action Association Northampton, 13 June 2003 10.30-3.30 pm Guidelines for the development of the specialist headache patient

2. Programme Dr Andrew Dowson: Current status of the MIPCA / MAA patient project Ms Ann Turner: Finalisation of the MIPCA / MAA patient checklist Dr Bill Laughey: Finalisation of the MIPCA / MAA headache diary Discussion session: Roles of the specialist headache patient Setting up specialist headache patient services Dr Andrew Dowson: Conclusions

3. Objectives Review and finalise the MIPCA / MAA patient checklist Review and finalise the MIPCA / MAA headache diary Discuss the role of the specialist headache patient Discuss the accreditation process Next steps –Nationwide meetings

4. Outputs Academic article MIPCA newsletter for GP Slide set for educational use

5. Current status of the MIPCA / MAA patient project Dr Andrew Dowson

6. Where we stand at present New MIPCA guidelines for migraine management in primary care MIPCA diagnostic algorithm for headache Management tailored to each patient’s needs MIPCA algorithm for migraine ‘10 Commandments’ of headache Primary care headache team

7. Careful diagnosis MIPCA has developed a simple but comprehensive scheme for the differential diagnosis of headache subtypes Diagnosis can then be confirmed with additional questions

8. Patient presenting with headache Migraine/CDH low High Q1. What is the impact of the headache on the sufferer’s daily life? ETTH (50%) Q2. How many days of headache does the patient have every month? > 15  15 CDH (2-4%) Q3. For patients with chronic daily headache, on how may days per week does the patient take analgesic medications? <2 22 No medication overuse Medication overuse Migraine (15%) Q4. For patients with migraine, does the patient experience reversible sensory symptoms associated with their attacks? With aura Without aura YesNo Exclude sinister Headache (<0.1%) Consider short-lasting Headaches (<0.1%) Dowson AJ et al. Curr Med Res Opin 2002;18:414-39

9. Behavioural therapy recommended for all Acute therapy recommended for all Prophylactic therapy recommended for certain patients Complementary therapies may be useful as adjunctive therapy Management individualised for each patient

10. Follow-up procedures Instigate proactive long-term follow-up procedures Monitor the outcome of therapy –Headache diaries –Impact questionnaires (MIDAS/HIT) Make appropriate treatment decisions

11.  Detailed history, patient education and buy-in  Diagnostic screening and differential diagnosis  Assess illness severity  Attack frequency and duration  Pain severity  Impact (MIDAS or HIT questionnaires)  Non-headache symptoms  Patient history and preferences Intermittent mild-to-moderate migraine (+/- aura) Intermittent moderate-to severe migraine (+/- aura) Aspirin/NSAID (large dose) Aspirin/paracetamol plus anti-emetic Oral triptan Nasal spray/subcutaneous triptan Initial consultation Initial treatment Rescue Behavioural/complementary therapies Copyright MIPCA 2002, all rights reserved

12. Aspirin/NSAID (large dose) Aspirin/paracetamol plus anti-emetic Paracetamol plus isometheptane Oral triptan Initial treatment Follow-up treatment Oral triptan Alternative oral triptan Nasal spray/subcutaneous triptan Rescue If unsuccessful Consider prophylaxis + acute treatment for breakthrough migraine attacks Frequent headache (i.e.  4 attacks per month) Consider referral Chronic daily Headache (CDH)? Migraine If unsuccessful Initial treatment Copyright MIPCA 2002, all rights reserved If management unsuccessful

13. Implementation of guidelines Primary care headache team –GP, practice nurse, ancillary staff and sometimes pharmacist (core team) –Pharmacist –Community nurses –Optician –Dentist –Complementary practitioners –Specialist physician (additional resource) Associate team members

14. Pharmacist Community nurse Optician Dentist Complementary practitioner Patient Primary care physician Practice nurse Physician with expertise in headache: GP; PCT; specialist Ancillary staff Primary care Specialist care Associate teamCore team Copyright MIPCA 2002, all rights reserved

15. Patient checklist

16. Use of patient checklist Pre-consultation Identification of headache as an issue by the patient / doctor / nurse / pharmacist Making a special appointment to see the doctor about your headache Completion of the patient checklist by the patient Bring completed checklist to consultation Use by the headache team to initiate management

17. Content of patient checklist Headache features –Aid to diagnosis Headache symptoms –Description and severity Medication use –Effectiveness and tolerability –OTC –Prescription

18. Issues with patient checklist Is it too long? –Briefer version needed? Need for validation –Road test with a group of patients? –Publishing of data will help endorse use

19. Headache diary

20. Suitable for use in primary care Patient-held long-term diary Comprehensive and definitive When to use: –Baseline assessments –Treatment choice –Follow-up

21. Headache diary - content Patient details and appointment record Daily diary: –Headache and other symptoms –Burden –Medications used –Other relevant information Monthly analysis Yearly calendar Self-rating of headache management

22. Patient guidelines

23. Pre-consultation First medical contact for headache –Opportunistic or specific –GP, nurse, pharmacist –Other healthcare professional e.g. dentist, optician, gynaecologist Patient support group –Migraine Action Association

24. Pre-consultation Patients’ actions Patient checklist / diary Nurse Doctor Contacts Pharmacist Make appointment to see doctor/nurse Pre-consultation Other healthcare professional Migraine Action Association

25. The first consultation Meet with the practice nurse to evaluate checklist / diary –Complete headache history questionnaire Agree terms of mutual respect and working in partnership with the doctor Talk to the doctor about: –Headache features –Medications used and their effects –Your expectations of treatment Ask for information Commit to, and take charge of your own management Agree targets and procedures Talk to the practice specialist headache patient

26. Diagnostic procedures Provide full and accurate information Agree to complete a headache diary and/or an impact questionnaire if asked to do so Patient needs to be motivated and accept a joint effort is required

27. Initial management Provide full and accurate information Agree to complete a headache diary and/or an impact questionnaire if asked to do so Agree targets and keep expectations realistic

28. Initial treatments Take your medications as prescribed Keep a record of treatment efficacy and any side effects –Headache diary Consider lifestyle alterations if suggested Also use complementary therapies if you wish but keep your doctor informed and tell your therapist about any medication you are taking

29. First headache consultation (Screening, diagnosis, management) Patients’ actions Headache diary Headache history Impact questionnaire Specialist patient Nurse Doctor Contacts Patient checklist / diary The first consultation Make appointment for follow-up

30. Roles of the healthcare professionals at the 1 st consultation Nurse –Screening (checklist, history, impact) –Provision of advice (lifestyle and non- prescription therapies) GP –Diagnosis –Management

31. Follow-up Make and attend follow-up appointments Ask questions if unsure of anything Complete headache diaries and impact questionnaires as requested Be aware that the headache may change over time Be honest about treatment effects and your preferences Do not overuse medications Review with the specialist patient

32. Follow-up Patients’ actions Headache diary Impact questionnaire Specialist patient Nurse Doctor Contacts Headache diary Impact questionnaire Follow-up Make further follow-up appointments

33. Patient / professional responsibilities: Pre-consultation Patient Identification of headache as an issue by the patient / doctor / nurse / pharmacist Make a special appointment to see the doctor about your headache Complete the patient checklist that the practice nurse gives you Take time to prepare what you want to say Doctor / nurse Hold special headache consultations Hold, explain and give out patient checklist form Arrange for a specialist patient to be available

34. Patient / professional responsibilities: The first consultation Patient Meet with the practice nurse to evaluate checklist –Complete headache history questionnaire Agree terms of mutual respect and working in partnership with the doctor Talk to the doctor about: –Headache features –Medications used and their effects –Your expectations of treatment Ask for information Commit to, and take charge of your own management Agree targets and procedures Talk to the practice specialist headache patient Doctor / nurse Review patient checklist and complete headache history questionnaire Give out headache diary and impact questionnaire Provide information, education and guidance Agree terms of mutual respect and working in partnership Allow sufficient time for consultation Communicate effectively with the patient Set targets and procedures Diagnosis Management strategy Prescribe treatments Refer to a specialist patient

35. Patient / professional responsibilities: Diagnostic procedures Patient Provide full and accurate information Agree to complete a headache diary and/or an impact questionnaire if asked to do so Doctor Conduct diagnostic screening Confirm diagnosis Listen to what the patient tells you

36. Patient / professional responsibilities: Initial management Patient Provide full and accurate information Agree to complete a headache diary and/or an impact questionnaire if asked to do so Agree targets and keep expectations realistic Doctor Assess illness severity accurately Provide therapy appropriate to the patient’s individual needs and preferences Set targets and discuss expected outcomes Provide sufficient treatment for at least 1 month

37. Patient / professional responsibilities: Treatments Patient Take your medications as prescribed Keep a record of treatment efficacy and any side effects Consider lifestyle alterations if suggested Also use complementary therapies if you wish but keep your doctor informed and tell your therapist about any medications you are taking Doctor Prescribe acute medication and behavioural therapies to all patients Prescribe additional prophylaxis if warranted Take account of the patient’s lifestyle needs Advise of expected side effects Allow patients to use complementary therapies

38. Patient / professional responsibilities: Follow-up Patient Make and attend follow-up appointments Ask questions if unsure of anything Complete headache diaries and impact questionnaires as requested Be aware that the headache may change over time Be honest about treatment effects and your preferences Do not overuse medications Review with the specialist patient Doctor / nurse Organise regular follow-up consultations Review and give out follow- up assessment tools –Headache diaries –Impact questionnaires Adapt management to changes in the illness or the patient’s circumstances Monitor therapy regularly and switch if necessary Beware of CDH developing

39. Finalisation of the MIPCA / MAA headache diary Dr Bill Laughey

40. The MIPCA diary project Aim: to produce one or more diaries suitable for use in primary care for all patients with headache Project started in 2002 Project leaders –Dr Bill Laughey –Dr Sue Lipscombe –Ms Ann Turner

41. Who are the diaries for? The patient The doctor / health professional Both

42. What is the diary for? Recording data –Triggers, patterns, results of medication, frequency of medication taken To make the patient feel the healthcare professional is interested To help the healthcare professional make lifestyle and medication suggestions To be a patient-held record of their personal headache history

43. When should a diary be used? Initial evaluation of the patient –Baseline assessments –Helping the choice of initial medications In follow-up –To record the progression of the headache –To monitor the response to therapy –To help in the choice of appropriate medications

44. Headache diary Beneficial for the prospective management of migraine Type of diary which can be used –Patient-held long-term diary for continual use, containing basic information on patterns of headache –Can also be used over a specific timescale for intense monitoring Data from the diary can be used to individualise follow-up treatment decisions

45. MIPCA diary Basic information Appointment record Day-by-day diary Monthly analysis Yearly calendar for month-by-month analysis Informative leaflet on headaches (use MAA document in their 2003 diary) Produced as a plastic-covered booklet that individual pages can be inserted into

46. Basic information Name:.............. Date of birth...... Month:..............Year:............. Regular medication (headache):.................. (prescription/ non-prescription) Dose:........ Date of last prescription:........... Regular medication (non-headache):................

47. Appointment record Patient:........................................ Doctor/Nurse................................... Practice Tel no:.................................. Your next appointment is: Date:..........................Time:................... Please tell us in good time if you cannot attend. Thank you (monitor for drop outs from care)

48. Daily diary: Core questions Day12345, etc Monthly analysis Headache present (Y/N) Start time (am / pm) Headache duration (h) Peak severity (mild / mod / mod-sev / sev / excruciating) Medications taken for headache (list and dose) Effectiveness of medications (excellent / good / reasonable / poor / nil)

49. Daily diary: Generic headache questions Day12345, etcMonthly analysis Presence of non-headache symptoms (list) Presence of factors that trigger the headache (list) Time lost from normal activities (h) Side effects of medications (list) Menstrual period present (Y/N) Other illnesses (list) Other relevant information (list)

50. Yearly calendar FactorJanFebMarAprMay Total number of headaches Days with headache Ave duration of headache Ave severity of headache Days with impaired function Days of medication Total dose Total number of tablets Best medication Headache-free days Normal function days

51. Self-rating of headache management

52. Rate your relief medication QuestionYesNo 1. Does your medication allow you to function normally within 2 hours of dosing? 2. Does your medication give some degree of relief in at least 2 headaches out of 3? 3. Are you satisfied with your relief medication? 4. Do you have no bothersome side effects? If you answered No to any of these questions, please see your doctor

53. Rate your preventative medication QuestionYesNo 1. Has your preventative medication at least halved the number of headaches you have per month? 2. Are you satisfied with your preventative medication? If you answered No to any of these questions, please see your doctor

54. Rate the impact of your headache QuestionYesNo 1. Does your headache significantly interfere with your work and/or your leisure time? 2. Does your headache significantly interfere with your sense of emotional well-being? 3. Do you have any other concerns which you think you should mention to your doctor? If you answered Yes to any of these questions, please see your doctor

55. Next steps Production of finalised diary Testing of the diary in the clinic –Reliability / validity / clinical utility Publication of results Production of finalised diary –Sponsorship? Distribution and PR –Medical and general media

56. Aspirations for diary Sustainable – year or more Comprehensive – daily, monthly, yearly Adaptable – e.g. photocopy more sheets Provide Information – more than a record

57. Information content of diary About this diary About MAA About MIPCA Migraine and headache information How to get the most from your GP Useful resources

58. Daily record suggestion Headache yes/no Migraine yes/no Severity Nausea/Vomiting Dislike Light, Noise, Smell Aura: yes/no Medication name and amount Medication effective: yes/no Period: yes/no Notes: e.g. Triggers

59. Issues relating to the diary Too complicated for the average patient? To complicated to complete during a headache? Monthly and annual analyses will need to completed by a GP / nurse Problems with self-rating –Treatments may differ with different situations

60. Discussion session: Roles of the specialist headache patient Setting up specialist headache patient services

61. Defining the roles of the specialist headache patient - 1 Mentor for newly diagnosed headache patients –Practical support Encourage diary keeping Exchange ideas for treatment (acute and preventative) Role in the clinic service –Triage agency

62. Defining the roles of the specialist headache patient - 2 Developing networks of care –Holding patient information sheets Development of local strategies –Management –Research –Audit

63. Implementation of a specialist headache patient service Accreditation Development of patient groups / meetings –How best to conduct patient meetings –Small meetings in surgeries? Development of a course / syllabus –Via MIPCA / MAA? Dissemination –Media –Training

64. Expert Patient Programme

65. Department of Health led initiative – not disease specific Pilot phase 2002-2004 Mainstreamed NHS 2007 2 senior trainers UK wide (Stanford University-trained assessors/quality management of courses) 2 trainers per PCT (DOH aim) Volunteer tutors (delivering in community)

66. Expert Patient Programme Recruit volunteer tutors (must have long term condition) 4-day residential training course Must deliver 2 community based courses Must be assessed by lead trainers Courses consist of 6 x two and half hour sessions Generic courses 7 th session condition specific

67. Expert Patient Programme Currently 500 volunteers UK wide (although mainly England) Includes Arthritis Care, Endometriosis Society, MS Society, Parkinson’s Disease Society 2 tutors attached to each PCT Each course delivered by 2 tutors

68. Expert Patient Programme Training delivered: Overview of self- management Chronic health conditions Relaxation/cognitive symptom management Feedback/problem solving Anger/fear/frustration Fitness/exercise Better breathing Fatigue Nutrition Living wills/power of attorney Community resources Communication Medication Making treatment decisions Depression Informing the health and social care team Working with your health and social care professionals Future plans

69. Expert Patient Programme Key benefits of training: Reduced severity of symptoms such as levels of pain Reduced levels of depression, fatigue and anxiety Better medication compliance and reduction in medication intake such as use of painkillers Reduced visits to GPs, A&E and Outpatients Reduction in length of stay in hospital Better communication with professionals Improvement in lifestyle Enhanced quality of professional-patient relationships and of consultations

70. Expert Patient Programme Key benefits of training Improvement in lifestyle and behaviours e.g. relaxation, exercise, diet Improved life control and activity Improved resourcefulness and life satisfaction Greater self-efficacy, independence and mobility Participants may find employment or become more active in the community

71. Expert Patient Programme Five-core self management issues: Problem-solving Decision-making Resource utilisation Developing effective partnerships with care professionals Taking action

72. Expert Patient Programme Costs Generic self-management programme EPP recommend using established deliverers e.g. Arthritis Care for training £2500 per group of 10-18 on 4-day residential course to train as tutors Must then deliver 2 courses in community for sufferers of long term conditions LMCA approximate total cost of training and delivering courses 2 Tutors x 2 courses = £7000

73. Expert Patient Programme “You can break the pain cycle” One day course of approximately four and half hours.Group size as before 10-18 Aims to teach self-management of pain only Often used as taster for full course; or for participants who cannot attend the full course Cost = £1000

74. Expert Patient Programme Empowering the migraine and headache patient Is the Department of Health programme appropriate for migraine/headache patients? Do we need to develop an alternative programme that is disease-specific and may encompass the relevant elements of the EPP programme?

75. Expert Patient Programme The way forward-suggestions Develop and deliver a pilot scheme of 7 one day courses at locations throughout the country that are a combination of education on headache management, elements of the generic self-management programme and awareness raising of the Expert Patient Programme The courses will aim to give each participant information on managing their headache/migraine more effectively but may also encourage them to enrol in a generic Expert Patient course and possibly to become an Expert Patient tutor. Cost of 7 one day courses would be approximately £30K

76. Expert Patient Programme The way forward - suggestions Buy into the EPP or courses delivered by e.g. Arthritis Care to develop our ‘own’ tutors who in turn would deliver courses in their community Encourage members to access courses already being delivered through EPP and PCTs and which are freely available (MAA could do this via website and newsletter) Develop and deliver our own disease-specific courses