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Can ill-health become a way of life? Dr. Craig Jackson Senior Lecturer in Health Psychology Faculty of Health and Community Care University of Central England

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

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

Pathogen Disease (pathology) ModifiersLifestyle Individual susceptibility Traditional model of Disease Development

Hazard Psychosocial Factors AttitudesBehaviour Quality of Life Illness (well-being) Biopsychosocial model of Illness

Is disease real or is it in the mind?

Assessment of Chronic Patients Once suspected of CMFSS….. Identify 1 practitioner as the patient’s principle carer Systematic assessment:case notes reviewed patient seen for 1 or more extended consultations Case notes:often extensive useful information within compile a summary of case notes evaluate accuracy of previously listed complaints evaluate accuracy of previous diagnoses include key investigations,personal & family circumstances Appointment:current problems & history explored encouraged to talk about symptoms, associations, concerns and state patient & practitioner to finally agree a problem list

Linking Emotions with Physical Symptoms “The good physician treats the disease, but the great physician treats the person.” William Osler

Non-Specific Symptoms Often missed in assessment

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

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 Bloating, 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

Case Summary of a Chronic Patient #2 DateSymptoms Referral 1985 (16)AnorexiaSecure unit teenagers 1986 (17)Suicide attemptSecure unit teenagers 1986 (17)Self-harmSecure unit CAMHS (A levels)Psychiatry Self-harm. AnorexiaUMC (18-20)(university) 1990Working as au pairGP monitoring & anti-depressants (21)(left university) 1993Self-harmSecure unit admission (24)(joined commune)ECT Female. Abused by father from 6 to 15. Moved to boarding school, then to grandparents Insomnia - Feeling worthless – Guilt - Recurrent morbid thought - Bleak views - Self harm – Suicide Ideation Scholastically bright. University. Dropped out. Tried own business. Business failed. Admin working.

Case Summary of a Chronic Patient #3 DateSymptoms Referral 1985 (17)Pervasive low moodGP monitors 1986 (18)Suicide attemptChild Psychiatry 1986 (18)Self-harmPsychiatry 1987 (19)Anorexia. Self-harm Psychiatry – CPN 1988 (20)Suicide attemptPsychiatry – CPN (failed romance) 1989 (21)Suicide attemptPsychiatry – CPN (failed romance) 1990 (22)Fertility worriesPsychiatry – CPN – fertility counselling 1990 (22) Working in officeGP monitoring & anti-depressants 1992 (24) Self-harmMH unit (open door policy) CPN 1996 (26) Chronic FatigueMH unit (open door policy) CPN 1998 (28) FibromyalgiaMH unit (open door policy) CPN

Case Summary of a Depressed Patient ? NO! DateSymptoms Referral Feb 2004Back PainGP – referred to physiotherapy Mar 2004Sciatica?Physiotherapy twice a week Apr 2004Symptoms continueSees private Osteopath Apr 2004Symptoms continue Discontinues Physiotherapy Apr 2004Symptoms continueBumps into GP in supermarket – GP refers for MRI May 2004Symptoms continueMRI scan shows left-side, disc 5 slipped Jun 2004Symptoms continueReferred to orthopaedic surgeon. Surgery required Female36 Academic Researcher Unhappy in job Received written warnings about time-keeping and performance

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

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

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

21 st Century Satanic Mills

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

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

Linking Emotions with Physical Symptoms Which causes which?

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

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“CMFSS”

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?

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

The benefits of support groups?

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

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?

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

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

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

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

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

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

Return to Work Longer off work = Less likely to return to work Longer off work = Less likely to return to work % returning to work months not working < Waddell, 1994

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)

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

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)

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.