The following lecture has been approved for University Undergraduate Students

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 ofChronic 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 ? start Ill-Health Present to A&E Present to GP Treatment end Advise end Investigation end Treatment end Management

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 Regularity Concordance 3. Hospital referral rates 4. Observation by staff Medical Nursing Clerical staff – pattern spotting software

5. Non-Specific Symptoms Often missed in assessment

6. Symptom Prevalence % Stuffy nose 46.2 Headaches 33.0 Tiredness 29.8 Cough 25.9 Itchy eyes 24.7 Sore throat 22.4 Skin rash 12.0 Wheezing 10.1 Respiratory 10.0 Nausea 9.0 Diarrhoea 5.7 Vomiting 4.0 Heyworth & McCaul, 2001 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

7. Case Summary of a Chronic Patient #1 Date Symptoms Referral Investigation Outcome 1980 (18) Abdominal pain GP --> surgical OP Appendicectomy Normal 1983 (21) Pregnancy GP --> obs and gynae Termination (boyfriend in prison) OP 1985-7 Bloating, abdominal GP --> Gastro and All tests normal IBS diagnosis (23-25) blackouts (divorce) neurology OP unexplained syncope 1989 (27) Pelvic pain GP --> obs and gynae Sterilised Pain persists for 2 years (wants sterilisation) OP 1991 (29) Fatigue GP --> infectious Nothing abnormal Diagnosis of ME by patient diseases unit and self help group 1993 (31) Aching muscles GP --> rheumatology Mild cervical Pain clinic - Tryptizol clinic spondylosis 1995 (34) Chest pain, breathless A&E --> chest clinic Nothing abnormal Refer to psychiatric services (child truanting) poss hyperventilation

8. Common Chronic Ill-Health Complaints • Low Back Pain • Carpal Tunnel Syndrome • Cumulative Trauma Disorders FORMS OF • Tendonytis CHRONIC PAIN • Repetitive Strain Injury & FATIGUE • Fibromyalgia • Irritable Bowel Syndrome • 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 • Environment • Chemicals • Stress • Toxins • Virus • Allergies • Traumatic injury • Anatomy / Ergonomic

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

11. “Exploit someone new today”

12. 21st Century Satanic Mills

13. Somatization and Fashionable Diagnoses Somatoform Disorders (DSM III category) “Somatization disorder” Psychiatric diagnosis Somatization 1. Rationalisation for psychosocial problems 2. Coping mechanism 3. Becomes a way of life Fibromyalgia Multiple Chemical Sensitivity Dysautonomia Reactive Hypoglycemia Irritable Bowel Syndrome Chronic 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 • Some may not have made the link themselves • “Anxiety causes muscle tension. Muscle tension causes headaches” • 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

16. Linking Emotions with Physical Symptoms Which causes which?

17. Modern-Day Patients • Patients more involved in their own care than even before • The term “consultation” is disappearing • Mistrust of Medicine e.g. Shipman, Allit, Meadows cases • 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 • Skill is in achieving the correct balance for each patient

18. Terminology of Chronic Patients Invokes many emotions in practitioners: despair frustration anger “Heartsinkers” “Difficult” “Fat folders” Inadvisable terms “Chronic complainers” “G.O.M.E.R” Lose faith Offensive Complaints “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 • Overlap with psychiatric diagnoses (66%) • Chronic long-term inability and tiredness • Both Physical and Psychological fatigue • Most prevalent in white, middle class thirtysomething females • Fatigue dominates activities and life

21. The benefits of support groups?

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

31. Abnormal Illness Behaviour after Compensable Injury Accident neurosis Accident victim syndrome Aftermath neurosis American disease Attitudinal pathosis Barristogenic illness Compensatory hysteria Compensationitis Compensation neurosis Fright neurosis Functional overlay Greek disease Greenback neurosis Invalid syndrome Justice neurosis Perceptual augmenter Post accident anxiety syndrome Pensionitis Postaccident fibromyalgia Post-traumatic syndrome Profit neurosis Psychogenic invalidism Railway spine Secondary gain neurosis Traumatic hysteria Symptom magnification syndrome Traumatic neurasthenia Traumatic neurosis Triggered neurosis Unconscious malingering Vertebral neurosis Wharfie’s back Whiplash neurosis Mendelson, 1984

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

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

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

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

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

37. Psychological Consequences of Chronic Illness • Back Pain • Distress Money worries - Disablement • Reduced Quality of Life • Delay in seeking help Fear Denial • Depressed / Anxious • Increased somatic complaints Pain Fatigue Breathlessness • 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 • Fear avoidance – stops trying things – disability mindset • Reduced activity • Expects passive treatment to be better than active treatment • Tendency to low morale, depression and social withdrawal • 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 • Sick role resolves intrapsychic, interpersonal or social problems • Fashionable diagnoses have considerable overlap • Occupational and Environmental syndromes • Non specific and subjective complaints • Underlying depression, anxiety, and history of unexplained complaints • Mass communication + support groups = fashionable way to solve distress • Behavioural aspects of chronic patients – blame, refusal, over-reporting etc.