1. The following lecture has been approved for University Undergraduate Students This lecture may contain information, ideas, concepts and discursive anecdotes that may be thought provoking and challenging It is not intended for the content or delivery to cause offence Any issues raised in the lecture may require the viewer to engage in further thought, insight, reflection or critical evaluation

2. Perceptions of Chronic ill Health Prof. Craig A. Jackson Head of Psychology Birmingham City University

3. Patient Pathways Time between start #1 and end #1 ? Time between end #1 and start #2 ? Symptoms ? Present to GP Present to A&E Treatment Management Investigation Ill-Health end Treatment Adviseend start

4. Detection of Chronic Patients Vital due to increased risk of iatrogenic harm Potential chronic patients could be identified by: 1. Size of paper records 2. Attendance records Frequency RegularityConcordance 3. Hospital referral rates 4. Observation by staffMedical Nursing Clerical staff – pattern spotting software

5. Non-Specific Symptoms Often missed in assessment

6. Prevalence of Non-Specific Symptoms Modern day complaints Multiple Chemical Sensitivity Chronic Fatigue Syndrome Sick Building Syndrome Gulf War Syndrome Low-level Chemical Exposure Electrical Sensitivity Stress-related ill-health Historical complaints Railway Spine Neurasthenia Combat Syndrome SymptomPrevalence % Stuffy nose46.2 Headaches33.0 Tiredness29.8 Cough25.9 Itchy eyes24.7 Sore throat22.4 Skin rash12.0 Wheezing10.1 Respiratory10.0 Nausea9.0 Diarrhoea5.7 Vomiting4.0 Heyworth & McCaul, 2001

7. Case Summary of a Chronic Patient #1 DateSymptoms ReferralInvestigationOutcome 1980 (18)Abdominal painGP --> surgical OPAppendicectomyNormal 1983 (21)PregnancyGP --> obs and gynae Termination (boyfriend in prison)OP 1985-7Bloating, abdominal GP --> Gastro andAll tests normalIBS diagnosis (23-25)blackouts (divorce)neurology OPunexplained syncope 1989 (27)Pelvic painGP --> obs and gynaeSterilisedPain persists for 2 years (wants sterilisation)OP 1991 (29)FatigueGP --> infectiousNothing abnormalDiagnosis of ME by patient diseases unitand self help group 1993 (31)Aching musclesGP --> rheumatologyMild cervical Pain clinic - Tryptizol clinicspondylosis 1995 (34)Chest pain, breathlessA&E --> chest clinicNothing abnormalRefer to psychiatric services (child truanting)poss hyperventilation

8. Common Chronic Ill-Health Complaints Low Back Pain Low Back Pain Carpal Tunnel Syndrome Carpal Tunnel Syndrome Cumulative Trauma DisordersFORMS OF Cumulative Trauma DisordersFORMS OF TendonytisCHRONIC PAIN TendonytisCHRONIC PAIN Repetitive Strain Injury& FATIGUE Repetitive Strain Injury& FATIGUE Fibromyalgia Fibromyalgia Irritable Bowel Syndrome Irritable Bowel Syndrome Chronic Fatigue Chronic Fatigue Those with heightened symptoms choose attributions to match concepts of what is currently acceptable in medicine External cause for illness preferred - patient becomes a helpless victim

9. Chronic Patient’s Attributions of Ill-Health Work Work Environment EnvironmentChemicalsStressToxinsVirusAllergies Traumatic injury Traumatic injury Anatomy / Ergonomic Anatomy / Ergonomic

10. Common Misconceptions about Health “I like money” “I like money too”

11. “Exploit someone new today”

12. 21 st Century Satanic Mills

13. Somatization and Fashionable Diagnoses Somatoform Disorders (DSM III category) “Somatization disorder” Psychiatric diagnosis Somatization1. Rationalisation for psychosocial problems 2. Coping mechanism 3. Becomes a way of life FibromyalgiaMultiple Chemical Sensitivity DysautonomiaReactive Hypoglycemia Irritable Bowel SyndromeChronic Fatigue Syndrome 1. Vague subjective multisystem complaints 2. Lack of objective lab findings e.g no organic cause 3. Semi-scientific explanations e.g “post-viral syndrome” 4. Symptoms consistent with Depression, Anxiety or general unhappiness

14. Somatization and Fashionable Diagnoses

15. Linking Emotions with Physical Symptoms Patients with physical symptoms arising from psychological distress Patients with physical symptoms arising from psychological distress Some may not have made the link themselves Some may not have made the link themselves “Anxiety causes muscle tension. Muscle tension causes headaches” Don’t rush patient to understand Don’t rush patient to understand Start from their perspective What do they think is causing physical problems (clues) Broaden agenda to where problems can be physical and psychological Broaden agenda to where problems can be physical and psychological

16. Linking Emotions with Physical Symptoms Which causes which?

17. Modern-Day Patients Patients more involved in their own care than even before Patients more involved in their own care than even before The term “consultation” is disappearing The term “consultation” is disappearing Mistrust of Medicine e.g. Shipman, Allit, Meadows cases Mistrust of Medicine e.g. Shipman, Allit, Meadows cases Less Mysterious and Powerful Less Mysterious and Powerful Change in what is expected from practitioners… …Has changed how practitioners view patients Emphasis on (1) risk reduction (2) public health “Do you know about statistics?” (3) preventative behaviour Some (older patients) still prefer to be told what the treatment will be Some (older patients) still prefer to be told what the treatment will be Skill is in achieving the correct balance for each patient Skill is in achieving the correct balance for each patient

18. Terminology of Chronic Patients Invokes many emotions in practitioners:despair frustrationanger“Heartsinkers”“Difficult” “Fat folders” Inadvisable terms “Chronic complainers” “G.O.M.E.R” Lose faith OffensiveComplaints “Chronic Multi-Form Somatic Symptoms”

19. Irritable Bowel Syndrome Common digestive disorder Functional syndrome Traumatic life events, Personality disorders, Stress, Anxiety, Depression Somatization Not a psychological disorder Night-workers & Loners Psychology important in how symptoms are perceived and reacted to Can poor QoL Become a predictor of who will suffer in advance?

20. Chronic Fatigue Syndrome Non-specific subjective symptom Non-specific subjective symptom Overlap with psychiatric diagnoses (66%) Overlap with psychiatric diagnoses (66%) Chronic long-term inability and tiredness Chronic long-term inability and tiredness Both Physical and Psychological fatigue Both Physical and Psychological fatigue Most prevalent in white, middle class thirtysomething females Most prevalent in white, middle class thirtysomething females Fatigue dominates activities and life Fatigue dominates activities and life

21. The benefits of support groups?

23. Malingering

24. Malingering 0 to 10% of consultations according to practice / specialty Secondary gain is external Custom and practice in some workplaces Entitlement 4 criteria – (i) intentional, (ii) false, exaggerated or misattributed complaints, (iii) volitional, (iv) non-trivial consequences

25. Malingering desire to outwit those in authority successful malingerers are likely to repeat behaviour illnesses that rely on subjective symptoms for diagnosis are easiest to simulate doctors are not trained or prepared for patient deception doctors and lawyers may collude either actively or passively against a third party

26. Factitious Disorders (DSM-IV) Dramatic but inconsistent medical history Unclear symptoms that are not controllable and that become more severe or change once treatment has begun Predictable relapses following improvement in the condition Extensive knowledge of hospitals and/or medical terminology, as well the textbook descriptions of illness Presence of many surgical scars

27. Factitious Disorders (DSM-IV) Appearance of new or additional symptoms following negative test results Presence of symptoms only when the patient is alone or not being observed Willingness or eagerness to have medical tests, operations, or other procedures History of seeking treatment at many hospitals, clinics, and doctors offices, possibly even in different cities Reluctance by the patient to allow health care professionals to meet with or talk to family members, friends, and prior health care providers

28. Compensation Neurosis Pending litigation Treatment results often poor Some overt malingering Exaggerated illness due to: suggestion+somatization rationalization+distorted sense of justice victim status+entitlement Adverse legal / admin. systems Harden patient’s convictions With time, care-eliciting behaviour may remain permanent Bellamy, 1997

29. Compensation Neurosis Improvement in health........may result in loss of status Patient compelled to guard against getting better Financial reward for illness is a powerful nocebo Exacerbates illness In a litigious society, will compensation neurosis become more widespread?

30. Accident Neurosis Failure to improve with treatment until compensation issue settled Failure to improve with treatment until compensation issue settled Accident must occur in circumstances with potential for compensation payment Accident must occur in circumstances with potential for compensation payment Inverse relationship to severity of injury - Accident neurosis rare in cases of severe injury Inverse relationship to severity of injury - Accident neurosis rare in cases of severe injury Low socio-economic status favors accident neurosis Low socio-economic status favors accident neurosis Complete recovery common following settlement of compensation issue ? ? Complete recovery common following settlement of compensation issue ? ? Miller, 1961

31. Abnormal Illness Behaviour after Compensable Injury Accident neurosisAccident victim syndrome Aftermath neurosisAmerican disease Attitudinal pathosisBarristogenic illness Compensatory hysteriaCompensationitis Compensation neurosisFright neurosis Functional overlayGreek disease Greenback neurosisInvalid syndrome Justice neurosisPerceptual augmenter Post accident anxiety syndromePensionitis Postaccident fibromyalgia Post-traumatic syndrome Profit neurosisPsychogenic invalidism Railway spineSecondary gain neurosis Traumatic hysteria Symptom magnification syndrome Traumatic neurastheniaTraumatic neurosis Triggered neurosisUnconscious malingering Vertebral neurosisWharfie’s back Whiplash neurosis Mendelson, 1984

32. Secondary Gain Pre-disposition What is the Motivation? What is the Motivation? Desire for attention Desire for attention Punish spouse / others Punish spouse / others Solve life’s problems Solve life’s problems Cry for help Cry for help Diversion from work Diversion from work Socially approved task avoidance Socially approved task avoidance sex with spouse work military duty

33. Secondary Gain Pre-disposition Non-economic motivation? Non-economic motivation? Loneliness Loneliness Difficulty expressing emotional pain Difficulty expressing emotional pain Depression Depression Anxiety Anxiety History of attention seeking when ill History of attention seeking when ill

34. Secondary Gain Pre-disposition Who are the Potential Claimants? Who are the Potential Claimants? Military patients nearing severance Military patients nearing severance Workers under retirement age Workers under retirement age Low job satisfaction Low job satisfaction Workers soon to be made redundant Workers soon to be made redundant Members of support groups Members of support groups

35. Abnormal Illness Behaviour (Care Eliciting Behaviour) Disability disproportionate to detectable illness Disability disproportionate to detectable illness Constant search for disease validation Constant search for disease validation Relentless pursuit of “enlightened doctors” Relentless pursuit of “enlightened doctors” Appeals to doctor’s responsibility Appeals to doctor’s responsibility Attitude of personal vulnerability and entitlement to care by others Attitude of personal vulnerability and entitlement to care by others Avoidance of health roles due to lack of skills and fear of failure Avoidance of health roles due to lack of skills and fear of failure Adoption of sick role due to rewards from family, friends, physicians Adoption of sick role due to rewards from family, friends, physicians Behaviours which sustain the sick role - complaints, demands, threats Behaviours which sustain the sick role - complaints, demands, threats Blackwell, 1987

36. Return to Work Longer off work = Less likely to return to work Longer off work = Less likely to return to work % returning to work 10 20 30 40 50 60 70 80 90 100 months not working <1 2 4 6 8 10 12 14 16 18 20 22 24 Waddell, 1994

37. Psychological Consequences of Chronic Illness Back Pain Distress Money worries - Disablement Distress Money worries - Disablement Reduced Quality of Life Reduced Quality of Life Delay in seeking helpFearDenial Delay in seeking helpFearDenial Depressed / Anxious Depressed / Anxious Increased somatic complaintsPainFatigue Breathlessness Increased somatic complaintsPainFatigue Breathlessness Begins bad habit of seeking help too readily Begins bad habit of seeking help too readily Adjustment Disorder – commonest psychiatric diagnosis Increased risk of suicide in early stages (of some conditions)

38. Behavioural Yellow Flags of Chronic Ill-Health Indicative of long term chronicity and disability Back Pain Negative attitude – back pain is harmful and disabling Negative attitude – back pain is harmful and disabling Fear avoidance – stops trying things – disability mindset Fear avoidance – stops trying things – disability mindset Reduced activity Reduced activity Expects passive treatment to be better than active treatment Expects passive treatment to be better than active treatment Tendency to low morale, depression and social withdrawal Tendency to low morale, depression and social withdrawal Social / Financial problems Social / Financial problems

39. Somatization & Sick Role The process by which psychological needs are expressed in physical symptoms: e.g., the expression or conversion into physical symptoms of anxiety, or a wish for material gain associated with a legal action. 1. Auxiliary social support 2. Rationalisation for failure 3. Gratification of nurturance 4. Manipulate interpersonal relations 5. Articulate distress: cry for help 6. Misinterpretation of anxiety / depression symptoms 7. Over-vigilance for significant symptoms 8. Avoids stigma with a physical cause 9. Over-attention reflects learned behaviour 10. Amplification and Negative Affectivity 11. Primary, Secondary and Tertiary gains 12. Unexplained physical symptoms in trauma victims (e.g. abuse)

40. Conclusion Somatization influenced by numerous factors Somatization influenced by numerous factors Sick role resolves intrapsychic, interpersonal or social problems Sick role resolves intrapsychic, interpersonal or social problems Fashionable diagnoses have considerable overlap Fashionable diagnoses have considerable overlap Occupational and Environmental syndromes Occupational and Environmental syndromes Non specific and subjective complaints Non specific and subjective complaints Underlying depression, anxiety, and history of unexplained complaints Underlying depression, anxiety, and history of unexplained complaints Mass communication + support groups = fashionable way to solve distress Mass communication + support groups = fashionable way to solve distress Behavioural aspects of chronic patients – blame, refusal, over-reporting etc. Behavioural aspects of chronic patients – blame, refusal, over-reporting etc.