The title of this post is inspired by the title of the book by Dr James Orbinski, a former president of Medicins san Frontieres and a personal hero. I recall when starting on my neurological clinical rotation, towards the end of my 4 years as a medical student, feeling quite excited as not only was this very relevant to me on a personal level as a student with the neuro-developmental condition, Tourette Syndrome, but also that the consultant neurologist to whom I was attached for several months, ran a movement disorders clinic which I would be attending and participating in. Imagine my astonishment after seeing many patients with Parkinson's, tremors, dystonias and many other neurological conditions, when, on asking for information and about teaching opportunities on TS and enquiring about whether we had any patients in attendance with TS, my consultant said to me 'Oh no we never see people with TS in neurology, we refer them to the psychiatric clinic'!
This is something that recently came to mind after hearing yet more negative comments about poor medical provision for Tourette Syndrome in Britain and also in the US which is considerably more advanced in this respect. Patients are commonly, or even arbitrarily, referred to psychiatrists and many have reported being less than satisfied with their consultations and outcome. Many people with TS will recommend asking a family practitioner if it would be possible to see a neurologist or developmental paediatrician who specialises in TS. There are some excellent psychiatrists who diagnose and treat the disorder but it is generally regarded as being a neurological disorder with a neuroanatomical/neurophysiological aetiology and is not accepted as a 'psychiatric' condition by most. There is a growing trend for those with TS, their parents and family to take greater 'ownership' of the disorder and to call the shots when it comes to raising awareness and educating the public and in helping correct the many misconceptions (among both public and profesionals) and ensuring appropriate provision in education, healthcare, discrimination legislation and employment rights. One aspect of confusion about TS and the perception of it being a mental disorder is the stigma associated with such a diagnosis. Those with a TS diagnosis by default become individuals with a history of mental illness. This may have profound negative implications for those who seek professional and other careers. If asked "do you have a history of mental illness?" do you answer no as you have a life-long neuro-developmental disorder which to most is neither an illness nor a psychiatric condition. From another perspective is it acceptable that someone should live their whole lives being regarded as having a psychiatric illness just because they are a little different but otherwise as normal as most of their peers.
I have heard so many accounts of mis-diagnosis and missed diagnoses even in cases where the medical history, symptoms, signs and collateral information from relatives and teachers etc are unmistakably suggestive of a diagnosis of TS. It is of course understandable that medical professionals might be reluctant to label a child (or adult) without first embarking on a period of 'watchful waiting' to see how things develop with time. There are several differential diagnoses that should be considered before committing to a provisional diagnosis of TS. However it is the combination of symptoms that occur in TS that is important. In many cases these are unmistakable. A significant problem is the tendency for doctors to insist on 'seeing' the signs of TS themselves and to place greater emphasis on their 'examination' of the patient rather than listen carefully to what the patient/parent is telling them. During training, student doctors have it impressed upon them that more than 90% of the diagnosis is in the 'patient history'. Subsequent examination and investigations are there to clarify and lend further support and to help eliminate other differential diagnoses. When considering symptoms suggestive of TS described during a patient history-taking, it is necessary to keep in mind that TS is not just vocal and motor tics. True these may be overt but they may also be very difficult to observe (many motor tics involve muscle movements/tensioning that are not immediately observable) or be suppressed/hidden. Tics are merely the 'tip of the iceberg'. A very large part of the difficulties that TS may represent to an individual can only be elicited by listening to what the patient describes as only they know what it 'feels like'.
I have been surprised both as a trainee student doctor, and as a patient with TS, in the approach of many health professionals and also in the high level of misinformation prevalent and, sadly, taught in regard to Tourette Syndrome. There appears to be no established patient-care pathway in place for those with TS despite a prevalence similar to that of autistic spectrum disorders. Management and referral approaches are generally inconsistent and often highly inappropriate. Unlike ASD, a relatively recently defined disorder, TS has been known and studied for over 120 years. There is also a voluminous scientific literature available. It is extraordinary how many doctors, nurses and psychologists believe TS to be a mental or psychiatric illness. Many also have a very stereotypical perspective of what TS is and how it presents itself and little or no understanding of appropriate history-taking, diagnosis and possible treatment and management options. The inconsistency of advice given by different doctors and clinical and educational psychologists is alarming and the inability of many to offer a realistic or accurate explanation of the disorder to patients and the parents of children is of great concern..
