Summary Report: First TS Srinivasan Neurosciences Working Group Theme: Disabling Epilepsy
	Dr. N Subbulakshmy Senior Research Consultant, The TS Srinivasan Centre for Clinical Neurosciences, Voluntary Health Services
	Equal opportunities, protection of rights, full participation, a barrier-free environment and social security are the cardinal principles of the persons with disability (PWD) Act 1995. "Should intractable epilepsy be considered a registrable disability?" Deliberations on this theme by the experts: disability professionals, neurologists, psychiatrists, clinical psychologists, social workers and other professionals with an epilepsy-centric interest was recently the focus of a two day long closed workshop in Chennai, on 9th and 10th December 2006.
	Organised by Neurosciences India Group and hosted by the TS Srinivasan Centre for Clinical Neurosciences - Voluntary Health Services. The workshop was spearheaded by Prof. ES Krishnamoorthy who currently chairs the Commission on Neuropsychiatric Aspects of the International League Against Epilepsy. The workshop had the active encouragement and support of Prof. PU Shah, Chairperson of the Working Group on Epilepsy and Disability of the Indian Epilepsy Association and took place with the full participation of that august body. The workshop also received financial sponsorship and support from The Wellcome Trust, UK, one of the world's best-known medical charities with a substantive academic stature.
	The group was lead in its discussions by eminent disability professionals with years of experience: Mrs. Poonam Natarajan, Chairperson of the National Trust for persons with Multiple Disability, Shri. Sankararaman, Secretary of Amar Seva Sangam, and Dr. Annie Shyam Director of SPASTIN among others. They shared their knowledge and experience from the disability angle, with enthusiasm and the quiet confidence derived from years of lobbying for the disabled. This group was complemented by an equally eminent group of epileptologists lead by Dr. PC Sethi the current president of the Indian Epilepsy Association and Prof. Praveena Shah the President elect along with many other senior neurologists/ epileptologists and members of the IEA Working Group on Epilepsy and Disability. While the Secretary General of the IEA Dr. HV Srinivas could not attend the workshop, he was there in spirit, having played a key role in helping the workshop establish itself. The workshop was also blessed by the participation of two senior statesmen of Indian neurology Prof. G Arjundas and Prof. Krishnamoorthy Srinivas who shared with this group pearls of wisdom born from years of astutely practiced clinical neurology.
	Even at the outset, it was clear to all present that they shared a common belief in which they were undivided. "Intractable epilepsy (IE) is a disability!" What was required in the next two days of brainstorming, was to consider the multidimensional aspects of IE as disability and to develop a comprehensive set of recommendations for national and international policy-makers to take forward. The caveat of course was that the link between epilepsy and disability be established without adding to the stigmatization and prejudice that people with epilepsy have to encounter, thus undoing the excellent work of national and international bodies.
	Having accepted this basic tenet the workshop proceeded apace to discuss the concept of intractability. The epilepsy professionals proceeded as is norm to define and debate intractability in epilepsy and to discuss the role of stigma as a contributory factor to disability. A timely exhortation by Dr. R. Thara, a Senior Consultant Psychiatrist and Director of the Schizophrenia Foundation (SCARF), India, with considerable experience of developing disability legislation set the tone for the two-days of deliberation. "Take off your clinical hats and put on your disability hats for the next two days" was her clarion call to this group. A series of presentations on the concept of intractability in epilepsy; comparisons with other medical and psychiatric disorders; the components of disability in epilepsy; the role of co-morbidity in determining epilepsy, all followed this discussion. The workshop reached its nadir with the presentation of original research data on the impact of epilepsy on the sufferer and their families by the Mumbai group lead by Prof. PU Shah. The paper provoked an animated discussion about the whole terrain of disability in epilepsy. The discussion concluded with an excellent, eminently viable and acceptable suggestion from Professor PU Shah the chairperson of the IEA Working Group. Borrowing a leaf from Dr. Thara's book by putting on her disability hat, she pointed out that epilepsy was disabling in a range of circumstances and not just in the narrow medical context of intractability. Her wise suggestion was that the focus on intractability be dropped. Instead, she suggested that the term "Disabling Epilepsy" be adopted and that the group proceeded to propose clear definitions, diagnostic criteria, parameters for assessment and diagnosis, instruments for future use and modifications of health policy for this construct. Thus was born the concept of "Disabling Epilepsy". Having proposed a seemingly new concept, the group was then charged with the responsibility of giving it a working definition. "Disabling epilepsy is a disorder characterised predominantly by seizures that are recurrent and poorly controlled; associated with considerable medical and psychosocial co-morbidity; with a range of adverse consequences; affecting the physical, emotional, social, occupational and vocational functioning of the person thus affected". It is noteworthy that the emphasis in this definition moved from medical intractability to the wider disability emphasis of role functioning across a number of domains. The group consensus was that the diagnosis of disabling epilepsy would require detailed information about the seizure episode per se and its consequences. There was wide agreement that disabling epilepsy with its considerable co-morbidity would impact on several areas of role functioning across the lifespan. Some key areas suggested for future discussion were:
	1. The fear of seizures and the attendant restriction in activity across the lifespan resulting in the denial of a range of opportunity 2. Embarrassment and perceived stigma due to seizures resulting in a self or family imposed restriction of social, occupational and vocational functioning as appropriate for age and social station 3. Poor educational and occupational attainment across the lifespan resulting in significantly diminished achievement 4. Diminished social achievement across the lifespan: peer group interaction; marriage and family; 5. The considerable financial burden of disabling epilepsy across the life span
	The stage was thus set for the First TS Srinivasan Neurosciences Working Group's defining moment. The team from NIMHANS delighted the group by highlighting the presence of existing disability legislation. That post-traumatic fits and epileptic convulsions had already found inclusion under the legislation on multiple disabilities came as a shot in the arm for this group of committed epilepsy and disability professionals. Indeed, the Ministry of Social Justice and Empowerment in 2001 had published guidelines for the assessment of disability due to these conditions.
	It was clear to the group that it had its work cut out from thereon. The group was urged by senior members of the epilepsy community not to reinvent the wheel and to place emphasis instead on the strategic augmentation of existing legislation. It was proposed that the future work of this group should be to:
	Reorient the existing legislation towards the more contemporary "disabling epilepsy" concept once this had been comprehensively defined
	To develop clear assessment procedures and guidelines for diagnosis and certification
	To develop awareness among people with disabling epilepsy and their families about need for and the existence of such disability legislation
	To bring such legislation to the consciousness of the policy makers at the national level thereby enhancing the future potential of many thousand people with disabling epilepsy
	To achieve these goals through original research across Indian centres, Mrs. Poonam Natarajan summarised what was necessary, with a unique three A's clarion call for Awareness, Advocacy and Action. Spurred on by her and other disability professionals a decision was made to form three task forces as part of this larger working group:
	1. Concept development task force lead by Prof. ES Krishnamoorthy: to define and describe clearly the concept of disabling epilepsy and its various component parts 2. Pilot research project task force lead by Dr. Manjari Tripathi: to develop an assessment tool for diagnosing and quantifying disabling epilepsy. To apply this in a multi-centric manner across the nation 3. Communication and sphere of influence task force lead by Prof. PU Shah charged with responsibility of developing a sustained and effective 3A's approach.
	Future plans include:
	1. A number of smaller meetings among task force members; exchange of information through a disabling epilepsy yahoo group that has now been established 2. An integration meeting with members of the Commission on Neuropsychiatric Aspects: International League Against Epilepsy in July 2007 3. An international conference on the concept of disabling epilepsy and its journey towards health policy in February 2008 Addressed systematically in this way it is expected that the concept of disabling epilepsy will become suitably refined and find its way into national, perhaps international health policy legislation.