Movement disorder, a neglected specialty

Shortage of experts, training centres, genetic facilities dwarf movement disorder specialty , finds out Shardul Nautiyal

Even as 10 million of the Indian population is affected with movement disorder, there are a mere 8 to 10 movement disorder specialists in the country, pointing to the apathy towards the 20-year-old sub-specialty of movement disorder.

Shortage of movement disorder specialists, movement disorder clinics and genetic lab facilities plague the diagnosis and treatment of the disorder, which encompasses diseases like Parkinson’s disease, Huntington’s disease, dystonia, tremor, myoclonus, tics, gait disorders, cerebellar ataxia etc.

A major reason for the shortage of movement disorder specialists is the absence of training centres in the country. In India, there is not a single training centre in movement disorder. Training in movement disorder abroad is offered in US, UK and Canada in the form of a fellowship programme.

Thus, we find only a few movement disorder clinics in the country, namely in centres like the All India Institute of Medical Sciences (AIIMS), Jaslok Hospital, Sree Chitra Tirunal Institute of Medical Sciences and Technology (SCTIMST), Thiruvananthapuram, National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore, Nizam’s Institute of Medical Sciences (NIMS), Hyderabad and GB Pant Hospital, New Delhi.

After spending as many as 11 years to become a neuro surgeon or a neuro physician, a neurologist does not evince interest in undergoing further training in movement disorders, lament experts. Says Dr Mohit Bhatt, neurophysician, Jaslok Hospital. “By the time, a person becomes a neurologist, he is atleast 35-year-old and does not prefer further education.” According to Dr Pawan Ojha, neurophysician, Hiranandani Hospital “The scholarship offered in training of movement disorder is a paltry amount, which is why, neuro-physicians do not undergo the fellowship programme offered in India and abroad.”

The low number of movement disorder clinics can also be attributed to the fact that patients of movement disorder comprise only two per cent of the entire neurological disorders, Dr Bhatt opines.

But why do we require movement disorder clinics? “That is because the clinics offer treatment in a dedicated manner and setting them will popularise the sub-speciality of movement disorder,” informs Dr Ojha.

A movement disorder clinic has a dedicated team of neuro-surgeons, neuro-physicians, counsellors, medical social workers, psychiatrists, ortho-paedic surgeons, nurses, physiotherapists, clinical geneticist and electrophysiologists.

The diagnosis of rare genetic tests for movement disorder is affected by the lack of genetic lab facilities. “The existing genetic lab work only at a research level and do not provide service for rare genetic tests,” informs Dr Madhuri Behari, professor, neurology, All India Institute of Medical Sciences (AIIMS), New Delhi.
In the absence of such labs, samples for genetic tests are sent to countries like the US and the UK, which costs around 200 USD to 300 USD. An additional amount of 100 USD to 150 USD is required for courier charges.

Experts further rue that epidemiological studies related to movement disorder is also very few. “What we need is a country-wide epidemiological study to look at the prevalence of major movement disorders,” informs Dr Behari.

To popularise the specialty and enhance cure of movement disorder patients, experts suggest that the government should support setting up genetic lab facilities. “Private organisations should participate in setting up genetic lab facilities,”opines Dr U Muthane, additional professor, neurology, NIMHANS, Bangalore.

Experts opine that epidemiological studies will help develop the sub-specialty of movement disorder. Indian Council of Medical Research (ICMR) is considering taking up such a study.

“We need to use standardised tools for these studies and see that they suit our country. They will help us understand the burden of these disorders in our country. They will also help us identify what are the specific problems affecting our population,” informs Dr Muthane.
Setting up academic centres with good clinical and research set up is also required. This will help aspiring movement disorder specialists in learning to diagnose and treat the movement disorder patients. To impart training in movement disorders, one needs to have trained teachers, good biochemical laboratory, set up facilities for genetic tests, MRI facility and PET facility. “The centres would be instrumental in handling country’s indigenous problems,” avers Dr Muthane. To which Dr Behari adds, the duration of the course should be at least one year, which could be in the form of a fellowship after DM (Neurology) or M Ch (Neurosurgery).

As of now, neurologists have been popularising the sub-speciality through lecture programmes, collaborative research and multi-centric studies currently. More CMEs should be conducted through academic societies like Indian Academy of Neurologists and Neurological Society of India to propagate awareness about movement disorders in the medical fraternity, opines Dr Ojha.

“A great deal of research exchanges, activities and educational programmes are also helping in popularising the sub-speciality of movement disorder in aspects like clinical, genetic, biochemical, molecular biology and case discussion,” adds Dr Behari.

Neurologist are concerned about the increase in cost of drugs for movement disorder after the onset of the new drug patent regime.“In order to make it affordable to the patients, we have to buy the patent from the foreign country, which is very expensive.

The expense will no doubt be passed on to the patients,” opines Dr Bhatt. Unless India starts producing its own drugs, patient will find it very expensive to afford the treatment, explains Dr Behari.

shardul@expresshealthcaremgmt.com