David Protheroe, Liaison Psychiatry, LGI October 2014 Or via LinkedIn

What do you want to learn – in 45mins?

Social model of managing acute illness Patient notices symptom Doctor examines and elicits signs of illness Doctor orders tests Doctor makes diagnosis Doctor prescribes treatment Patient undertakes to take the treatment Cure!

Symptoms in US primary care Kroenke and Mangelsdorff, 1989

Prevalence of unexplained symptoms in consecutive new attendees to medical clinics at Kings College Hospital ClinicPrevalence Chest59% Cardiology56% Gastroenterology60% Rheumatology58% Neurology49% Dental49% Gynaecology57% Total56%

What groups of patients are we talking about here Frequent attenders with many transient symptoms with little or no organic illness Single symptom: limb paralysis or memory loss or non epileptic attack disorder Long term or short term Multiple syndromes: Headaches, migraine, IBS, fibromyalgia, chronic fatigue, temporo-mandibular joint dysfunction, vulvodynia, etc Patients with mixture of organic illness and functional symptoms

MUS: does it really matter? 22% of all people attending primary care have sub- threshold levels of somatisation disorders 50+% of new attendees in medical clinics attracted a diagnosis of unexplained symptoms 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 Cost to English NHS = £3bn or £14Bn to society

Do we miss organic pathology? Slater 1965 Many “hysteria” patients were later diagnosed with organic illness Repeated Roth, Trimble/Mace, Crimlisk – 2-4% Kooiman et al - 5 out of 284 Stone et al – 4 out of 1030 When should we stop investigating? Iatrogenic harm

ICD-10 Somatisation Disorder Undifferentiated somatoform disorder Hypochondriasis Somatoform autonomic dysfunction Somatoform pain disorder Dissociative Disorder Conversion disorder

Other terms in use Somatisation Functional illness Functional Somatic Syndromes Medically unexplained symptoms Somatoform illness Bodily distress syndrome Psychogenic illnesses Psychosomatic illness Stress related illness Its depression

Psychosomatic Medicine, Alexander 1950 Upper GI problems Comparative clinical studies conducted in the Chicago Institute for psychoanalysis have shown that in all patients suffering from psychogenic gastric disturbances a predominant role is played by the repressed help seeking dependent tendencies. A strong fixation to the early dependent situation of infancy comes in conflict with the adult ego resulting in hurt pride; and since this dependent attitude is contrary to the wish for independence and self- assertion it must be pressed.

Psychosomatic Medicine, Alexander 1950 Constipation The psychogenic findings in chronic constipation are typical and constant; a pessimistic, defeatist attitude, a distrust or lack of confidence in others, the feeling of being rejected and not loved, are often observed in these patients. Chronically constipated patients have a trace of both attitudes: the distrust of paranoia and the pessimism and defeatism of melancholia. … in such cases psychotherapy must be directed toward a reorientation of the total personality. Diarrhoea Financial obligations which are beyond the patient’s means is a common factor in some forms of diarrhoea. Abraham described the emotional correlation between bowel movement and spending of money.

What are the difficulties in caring for this group? People don’t seem to like them Demanding, time consuming Expensive Fear of missing an important diagnosis Fear of litigation

Aetiology of M.U.S Secondary gain or social benefits of illness Early trauma Neglect Sexual, physical, psychological abuse Modelling in childhood Precipitated by stressful events Dilemmas Organic illness? Autoimmune illnesses Low grade anxiety/depression FH anxiety/depression/functional illness Cultural component Illness beliefs Family

Adversity Precipitating life event (or infection/trauma) Symptoms & disability Maintaining factors: Illness beliefs Social benefits of illness Systemic issues Modelling?

20 things that clinicians say (or do) to patients which is unhelpful

Unhelpful things that we say or do - 1 Talk down to the patient Monologue freezing out patient’s view Feel defensive or uncomfortable –so patient picks it up Dismissive attitude Stigmatise the patient Imply that the patient is not experiencing the pain Appear to blame the patient because there is no pathology Pass the patient to a junior doctor Imply it is the patient’s responsibility or they can get themselves out of it

Unhelpful things that we say or do - 2 Answer definitively when unsure “There is nothing wrong with you” “It’s just depression” “It’s psychological” What do doctors mean by that? What do patients understand by that? “You have genuine pain” Over investigation may promote sick role and abnormal illness behaviour Quickly switch the agenda from seeking pathology to psychological explanation

Number needed to offend (Stone, 2002) DIAGNOSISNNO All in the mind Hysterical Psychosomatic Medically unexplained Depression related Stress related Functional

Aims of treatment Move from a an acute model of illness to a chronic model of illness Move towards acceptance and coping Gain a shared understanding of the problem Improved self management Encourage patient to rebuild life with symptoms Contain costs Reduce iatrogenic harm

10 things that are true about functional syndromes

True/useful facts about functional syndromes - 1 Common, well recognised We doctors do not always deal with these problems very well Humility Can be very unpleasant and disabling Will not shorten your life Not well understood “I don’t know but I don’t think any one else does either” It isn’t your fault You did not do anything to bring it on It may be a brain/mind problem rather than a knee problem May have started with an injury to your knee but although you knee has healed your pain continues There is something wrong but we just cannot see it… May be a physiological explanation at some level Will not show up on scans

True/useful facts about functional syndromes - 2 Share physiological explanation of chronic pain, Brain unable to filter out benign messages If you get one or two symptoms likely to get more at some point Can be precipitated by stress Early life experiences may make things worse Some syndromes may be precipitated by infections and physical trauma Not consciously manufactured Some unconscious factors Explain links to physical illness Autoimmune, atopic illness Can never completely eliminate all risk of pathology in anyone even if they have no symptoms

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

What else can we do? Introduce the concept of functional illness early on Agree a shared vocabulary A named syndrome such as IBS or fibromyalgia helps Open “adult to adult” communication Two way inclusive dialogue What do you think? Consistent approach Avoid over-psychologising Broaden rather than switch the agenda to psychological issues Involve a family member Use analogies Computer: software vs hardware Satellite looking down at a school Agree to limit unnecessary investigation or medication If you disagree with a patient in a letter Put both sides views with equal prominence

In a nutshell… Good communication…

And finally