1. Do you need doctors if you have Google? Janet Hall MB.ChB FRCGP General Practitioner (Sophies 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. Sophies symptoms acute and severe Attacks-? 50 in 18 months -contorted facial movements and various weaknesses plus an assortment of other symptoms

12. Sophies 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. Sophies 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. Sophies 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. Sophies 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. Sophies 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 Raynauds (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. Sophies 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 thats making your life very difficult you begin to feel that perhaps you are a hypochondriac or whats worse that other people see you as one. Whether you are or not, you still feel the pain

29. Sophies 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. Sophies 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 theyll 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. Sophies personal journey 4 Her emotions Its 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. Sophies 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. Sophies 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, Raynauds , livedo reticularis, research papers of Hughes and Kashmata

38. Conclusion