Medically Unexplained Symptoms

1. Medically Unexplained Symptoms Adrian Flynn Consultant Liaison Psychiatrist January 2013

2. Aims • Be contentious • Explore current practice • Consider costs and prevalence • Empathy • Psychological Explanation • New classifications / way of thinking • General tips

3. Format • 45 mins presentation and discussion • 15mins trainee’s experience BREAK • 30 mins Group discussion and feedback • 20mins Consultation / suggestions • 10mins Discussion / re-cap

4. MUS • Medically Unexplained Symptoms (MUS) are persistent bodily complaints for which adequate examination does not reveal sufficient explanatory structural or specified pathology.

5. Never Have Your Dog Stuffed

6. 3 Recent Referrals • Miss P • Ms F • Mrs T

7. Is this familiar? • What do you want to say to these patients? • What would you have said to them 20years ago? • Do you use diagnostic terms with these patients? • How were you taught or where did you learn about the management of these patients? • What guidelines do you follow? • Do doctors manage this consistently? • How do you feel about these patients?

8. Classification • Somatisation Disorder • Somatoform pain disorder • Hypochondriasis • Functional Somatic Syndromes • Dissociative Disorder • Conversion disorder • Are you comfortable with any of these? • Are your patients?

9. But does it really matter? • 22% of all people attending primary care have sub-threshold levels of somatisation disorders • A further 5% of individuals have clinical somatisation disorders They account for • 8% of all prescriptions • 25% outpatient care • 8% inpatient bed days and • 5% accident and attendances • 50% more likely to attend primary care • 33% more likely to attend acute secondary care • 20% of MUS patients account for 62% of spend

10. Signs, symptom ill-defined conditions ICD • 6.3% in US healthcare • 25% of new symptoms in primary care – but one visit only • But 10% (2.5% of total) are persistent • More common in secondary care – 40% persist

11. But does it really matter? • Clinic Prevalence (95% CI) • Chest 59% (46-72) • Cardiology 56% (46-67) • Gastroenterology 60% (45-73) • Rheumatology 58% (47-69) • Neurology 55% (45-65) • Dental 49% (37-61) • Gynaecology 57% (50-68) • Total 56% (52-60) • Nimnuan et al 2001 J Psychosom Res

12. But does it really matter? • The NHS cost in England amounts to £3.1Bn (2008/9) with a further £5.2Bn attributable to lost productivity and £9.3Bn reduced quality of life Total £14Bn • Sainsbury Centre for Mental Health - £2.8Bn • Equates to £25M – £130M per year in Cornwall • Diabetes? • Bermingham S, Cohen A, Hague J, Parsonage M. The cost of somatisation among the working-age population in England for the year 2008/09 Mental Health in Family Medicine • No health without mental health: A cross Government mental health outcomes strategy for people of all ages Supporting document – The economic case for improving efficiency and quality in mental health.2010 Department of Health

13. Scottish Neurological Symptoms Study • N = 3782 - ‘To what extent can the patients symptoms be explained by organic disease?’ • Not at all - 12% • Somewhat - 19% • Largely - 24% • Completely - 45%

14. 12 Month Outcome of the 31% with MUS

15. Do Medically Unexplained Symptoms Matter? Carson et al. J Neurol Neurosurg Psychiatry 2000;68:207–210 • N = 300 • Similarly categorised • Similar levels of physical disability • Higher total symptom count and pain in those with lower organicity • Higher levels of anxiety and depression in the lower organicity group 70% vs 32%

16. Change of Diagnosis • Completely - 0.3% • Largely - 2% • Somewhat - 0.5% • Not at all - 2% • At follow-up only 4 out of 1030 patients (0.4%) had acquired an organic disease diagnosis that was unexpected at initial assessment and plausibly the cause of the patients’ original symptoms.

17. Underlying Pathology • Slater 1965 • Repeats Roth, Trimble/Mace, Crimlisk – 2-4% • Kooiman et al - 5 out of 284 • Stone et al – 4 out of 1030 • ?Negligent to continue to investigate

18. Medical Generalism RCGP 2012 • Real conversations are required • Real conversations require real empathy • Empathy requires understanding • Understanding needs to be conveyed • Understanding combines - biomedical knowledge - biographical knowledge • Conveying requires communication skills

19. Is there a way of doing things differently?

20. Never Have Your Dog Stuffed

21. The Development of Symptoms

22. What is really going on? • We tend to respond to people in the way we anticipate they will treat us and From how others relate to us, we learn how to relate to ourselves. • Personal biographical history • Reciprocal roles • Abuse and Neglect

23. What is really going on? Mother Caring Valuing Child Cared for Valued Child/Self Caring Valuing Child/Self Cared for Valued

24. What is really going on? • Abuse and Neglect Critical Rejecting anger Crushed Rejected Hopeless Contemptuous (disgusted) Contemptible (disgusting) Withholding (limited) Deprived (unsatisfied) Demanding Unreasonable Overwhelmed Inadequate Powerful Imposing Disempowered Silenced Bullying Bullied

25. What is really going on? • We tend to respond to people in the way we anticipate they will treat us • A person enacting one pole of a RR procedure may either: • Convey the feelings associated with the role to others, in whom corresponding empathic feelings may be elicited (identifying) or • Seek to elicit the reciprocating response in the other’ (reciprocating)

27. But does it really matter? • Could we make the argument that modern medicine is spending 30-50% of its time, poorly managing the consequences of abuse and neglect?

28. ‘A ghost in the machine?’ • Descartes – ‘substance’ ‘lead the mind away form the senses’ • Demertzi et al 2009 Disorders of Consciousness. N=2100, • 53% mind and brain are separate • 37% mind is fundamentally physical

29. ‘A ghost in the machine?’ • There is a doctrine about the nature and place of the mind which is prevalent among theorists, to which most philosophers, psychologists and religious teachers subscribe with minor reservations. Although they admit certain theoretical difficulties in it, they tend to assume that these can be overcome without serious modifications being made to the architecture of the theory.... [the doctrine states that] with the doubtful exceptions of the mentally-incompetent and infants-in-arms, every human being has both a body and a mind. ... The body and the mind are ordinarily harnessed together, but after the death of the body the mind may continue to exist and function.

30. New Classifications • Higher order constructs • Less context dependant • Less vulnerable to change • Current FSS etc… • Absence of biological correlates / points of rarity

31. text MUS Hypochondriasis Medical Illness Depression and Anxiety Somatoform Disorders Functional Somatic Syndromes

32. New Classifications • Complex Somatic Symptom Disorder - health related anxiety - disproportionate concerns - excessive time and energy • Bodily Distress Syndrome - cardiopulmonary - musculoskeletal - gastrointestinal - general

33. What to do? • Metabolic syndrome – knowing what to expect and what to do about it? • Can we make it that straightforward?

34. Expect and Enquire • CFS + IBS + FMA • NEAD / dissociation • Functional neurology • Pelvic / Abdominal / Vertebral Pain • Dysuria / retention symptoms • Dysmenorrhoea • Anxiety / depression • Start explaining and making the links • Avoid ‘cure’ discussions / treatments

35. Numbers needed to offend • Medically unexplained • Depression related • All in the mind • Stress related • Hysterical • Functional • Psychosomatic

36. DIAGNOSIS All in the mind Hysterical Psychosomatic Medically unexplained Depression related Stress related Functional NNO 2 2 3 3 4 6 9 Numbers needed to offend

37. Don’ts • Tell them that there is nothing wrong. • Normalise. They are not normal for the patient. • Say it is all in your mind • Only reassure repeatedly • Tell them there is nothing you can do to help. • Give results of normal tests and reassure and think that this alone will help. • Remove gall bladder, appendix, uterus, bowel, teeth • Prescribe dependence forming drugs • Retire them on grounds of ill-health

38. Do’s • Indicate that you believe the patient • Explain how symptoms occur • Explain what they don’t have • Explain what they do have • Emphasise that it is common • Emphasise that it is reversible • Emphasise that self-help is a key part of making a recovery • Involve a carer and repeat the explanations • Be honest and use praise

39. Also • Metaphors may be useful • Brain playing tricks • Use written information • Get the family on side • Consider Anxiety / Depression • Use anti-depressant medication • CBT – often re-framed • Communicate and deal with the system

40. Care Plan Improving well-being - relaxation / mindfullness - 5 a day - routine / pacing / structure / diary Managing a crisis - self-management / local support - clear plans for primary and secondary care Avoiding harm - in-built review - being clear that medicine can be harmful - dealing with the system - sharing information - dependence forming drugs

41. Resources • Diaries • Self-management toolkit • Boom and bust graph • Mental Health 5 a day • Relaxation – CD • www.mentalhealth.org.uk • www.neurosymptoms.org • www.nonepilepticattacks.info • www.NEADtrust.co.uk • www.paintoolkit.org

42. London Pilot • 227 patients from 3 practices (0.84%) • >£1M expenditure in 2 years • £307k in GP time alone • 1/5 had in-patient treatment - £250k Intervention (over one month) • Reduced GP contacts by 1/3 (258 vs 375) • Reduced investigations by 1/4 (54 vs 74)

43. Training GPs • Knowledge • Practice • Treatment • Services / commissioning

44. Aims • Be contentious • Explore current practice • Consider costs and prevalence • Empathy • Psychological Explanation • New classifications / way of thinking • General tips

45. A Service • Clear point of entry • One-stop-shop + Out-patients • Liaison Psychiatry formulation • CBT / GET • Hypnotherapy (IBS) • Mindfulness • Physiotherapy / OT • Pain / self management groups • Managing the system

46. Identify • >/= 10 attendances in 2 years • >/= 2 negative investigations in 2 years • the symptom does not fit with known disease models or physiological mechanisms • the patient is unable to give a clear and precise description of the symptoms • symptoms seem excessive in comparison to the pathology

47. Identify • symptoms occur in the context of a stressful lifestyle or stressful life events • patient attends frequently for many different symptoms • the patient seems overly anxious about the meaning of the symptoms and has strongly held beliefs about a disease process causing the symptoms • patient complains of pain in multiple different sites

48. The End - Culture Change? Is this how we will be practicing medicine with these patients in 10 years time?