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A f google doctors 20130831

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1. Do you need doctors if you have Google? ã Janet Hall MB.ChB FRCGP General Practitioner (Sophie’s GP) ã Clinical Advisor NHS England (Kent and Medway Area Team)…
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  • 1. Do you need doctors if you have Google? • Janet Hall MB.ChB FRCGP General Practitioner (Sophie’s GP) • Clinical Advisor NHS England (Kent and Medway Area Team) Performance and Revalidation • Sophie Tate (aged 27) patient
  • 2. SELF-DIAGNOSIS?
  • 3. Plan of talk • Patients using Google and the internet in general • The story of one young woman from the doctors’ perspective • Her story from her own perspective • How the diagnosis was reached • What lessons to be learnt • Conclusions about usefulness of internet for patients
  • 4. Advantages of patients researching their symptoms • It encourages self education of patients who can the have more useful discussions with doctors • Doctors can encourage the patient to use the more reliable sites • (Almost) everybody uses the internet for searching and why not medicine?
  • 5. Disadvantages of patients using internet • Some patients become more anxious as extreme cases are often described. • False hope may be given when ‘miracles’ achieved by ‘alternative’ medicine • Information overload with confusion
  • 6. Is the internet any use in diagnosis? • BMJ 2006 Tang and Ng googled 26 case histories published in the New England Journal of Medicine without knowing the correct diagnosis using 5 symptoms • They were correct in 58% cases
  • 7. Inspiration for this talk • Sophie • ‘Patient journeys’ published in BMJ- 100 in the past 8 years-and the consequences for the patient, their family, friends and health professionals
  • 8. The story of Sophie Part 1 The doctors
  • 9. Past Medical History Endometriosis and polycystic ovaries (extensive investigations before correct diagnoses reached – after extensive internet research by patient)
  • 10. Family History Father has auto immune thyroid and liver diseases One sister has epilepsy
  • 11. Sophie’s symptoms acute and severe ‘Attacks’-? 50 in 18 months -contorted facial movements and various weaknesses plus an assortment of other symptoms
  • 12. Sophie’s symptoms (some) Either continual or intermittent • Lump in throat -only able to talk when head turned to the right • Numb patches on body and odd mottling of skin • Small infrequent electric shocks to right cheek • Dizzy on standing and confusion • Sharp pains to various parts of the body close to joints • Poor vision- like focusing a camera lens • Chest pain, waking gasping for air, tachycardia (120- 150) and low BP (105/49) • Excessive reaction to cold with symptoms much worse in cold weather
  • 13. Photos of Sophie • Taken during periods of of being unwell
  • 14. Facial spasmfaFf Facial spasms of Sophie
  • 15. One foot cold and the other hot
  • 16. Rash on feet
  • 17. BLOTCHY RASH HANDS
  • 18. Blotchy leg
  • 19. Change of colour in thehands
  • 20. THE FACIAL SPASMS
  • 21. Sophie’s medical journey 1 • 12 December 2011 to A and E • Sudden onset dysphonia September continuing for 4 months. Advised to see neurologist. • Dec 2011 to Jan 2012 saw neurologist and a head and neck surgeon; numerous investigations • 21 Jan 2012 urgent admission to hospital weakness in right arm and both legs. Thrombolysed after video consultation with a neurologist, admitted to a stroke unit. Further attack witnessed by nurses. Improved (including voice intermittently), BUT discharged with a zimmer frame after 5 days
  • 22. Sophie’s medical journey 2 • 1 day later returned as emergency. reduced power in right leg 3/5, hyper reflexia on left , double vision in horizontal plane and poor co-ordination in finger/nose test • Diagnosis functional neurological disorder-definitely NOT a stroke
  • 23. Sophie’s medical journey 3 2012  Feb chest pain seen in A and E  Feb vascular surgeon  Feb cardiologist  Feb vascular and endovascular surgeon  Feb ENT consultant  April psychiatrist  June Lupus clinic  August haematologist
  • 24. Sophie’s medical journey 4 • September 2012 Rheumatologist • November 2012 Neuro-psychiatrist • December 2012 Gynaecologist • February 2013 Neurologist • June 2013 Professor X -the end of the journey!
  • 25. Investigations • Numerous blood tests including anti- phospholipid antibodies, cryoglobulin screen, porphyria screen • EEG • ECG x 3 • MRI scan head and neck x 4 • CT scan x3 • Barium swallow • Ultrasound x 3 • Doppler neck • Nasendoscopy x2
  • 26. The doctors’ diagnoses • Functional neurological disorder • Migraine • Anxiety • Raynaud’s (Primary)
  • 27. Doctors’ comments • “I cannot think of an organic lesion which would cause these symptoms”-many doctors • “Thrombolysis was a placebo” • “Suggestions to have CBT, osteopathy, hypnotherapy, speech therapy, physiotherapy • “You will not get better unless you stop all medication or stop seeing doctors” • Only one doctor (a psychiatrist) said “no it is not anxiety, you are not mad or making it happen in your brain”
  • 28. Sophie’s personal journey 1 • She wrote a Blog called “The diary of a hypochondriac” • “If you are ill constantly and seem to always have your brain on pain and discomfort that’s making your life very difficult you begin to feel that perhaps you are a hypochondriac or what’s worse that other people see you as one. Whether you are or not, you still feel the pain”
  • 29. Sophie’s personal journey 2 • 26 years old and many stroke like episodes + numerous unexplained symptoms • Some clear cut medical signs. • Her experience with doctors was almost universally bad (NHS and private)
  • 30. Sophie’s personal journey 3 Her quotes • “I have never been in a room with such an arrogant self-absorbed prick” • “Consultants pass me round like a hot cake assuming it is not their problem but they’ll happily take their fees from BUPA” • NHS hospitals washed their hands of me a long time ago and all I have got from the Private Sector is a hefty dose of radiation” • “These doctors are so strange, depending on their mood they seem to discount another medical opinion if it does not suit.”
  • 31. Sophie’s personal journey 4 Her emotions • “It’s making me sad, just lost. None of it makes any sense” • “My stupid body. I want it to work better” • “All I want is my life back. A job, a partner, maybe even a family. Definitely a cat. I hate being a burden to my parents at 27 years old” • “Just been crying and crying”
  • 32. Sophie’s personal journey 5: The internet: Hours Googling symptoms and researching various conditions on internet Using sites such as Healthunlocked.com Showing the photos on the blog . Replies including one “Have you thought about Hughes syndrome?”- Numerous tests for this had always been negative or faintly positive (non significant)
  • 33. Sophie’s personal journey 6 • June 2013 email from Sophie to Professor Khamashta at The Lupus clinic sending the photos • Immediate appointment and subsequent diagnosis of sero-negative Anti-phospholipd syndrome • Started a trial of Clexane and aspirin with almost immediate improvement of symptoms
  • 34. Anti-phospholipid syndrome (Hughes syndrome) Diagnostic criteria • Clinical evidence of vascular thrombosis or complications of pregnancy such as recurrent miscarriage or severe pre-eclampsia PLUS • Laboratory criteria positive tests 12 weeks apart Lupus anticoagulant, anticardiolipin antibody (high titre) or anti-b2-glycoprotein 1 antibody • (minor sign livedo reticularis)
  • 35. Sero-negative antiphospholipid syndrome • Hughes and Khamashta 2003 BMJ described condition of sero-negative APS (20 years after original diagnosis of APS) • 2012 Khamashta et al published in Ann Rheum Dis paper on clinical manifestations of SP-APS and SN-APS. No significant differences in vascular events in the 2 groups • August 2013 Personal communication from Professor Khamashta ”Less than 1% of cases of APS are sero-negative”
  • 36. Lessons to be learnt • Do not jump to the conclusion that an illness is functional just because you do not understand what is going on. Use term ‘medically unexplained symptoms’ • Work with the patient when they bring information including photos to the consultation. Listen carefully. • Do not diagnose a psychiatric illness unless the patient has evidence of a mental illness. Most patients are anxious when they see a doctor. • If the tests are negative and there is good clinical evidence think of the possibility of a sero-negative diagnosis (eg rheumatoid arthritis) • Ensure your notes and letters are accurate.
  • 37. Why did the diagnosis take so long ? • Sophie annoyed the doctors because she had done so much research herself • The doctors were all too specialist to think ‘outside of the box” • They took more notice of the test results than the clinical evidence and some were biased • Important evidence was not acted upon- original diagnosis of stroke, Raynaud’s , livedo reticularis, research papers of Hughes and Kashmata
  • 38. Conclusion
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