ENNAPADAM S. KRISHNAMOORTHY
On the even of National Epilepsy Day, a look at what we need to develop special legislation that is sensitive to the needs of people with disabling epilepsy in India?
The tendency to have recurrent seizures that often strike without warning imposes many restrictions on the person thus affected
Epilepsy is the most common serious neurological condition and affects between five and seven per thousand persons in the community. Epilepsy is today, thanks to the many developments in medical science, eminently treatable. However, about a third of all people with epilepsy do not gain control over seizures, despite best treatment. Further, the vast majority of people with epilepsy in countries like India experience barriers to healthcare, failing the “Four A” test of availability, accessibility, affordability and acceptability. Thus, it has been estimated that over 90 per cent of people with epilepsy in developing nations like India experience a “treatment gap”!
Like many other longstanding neurological conditions, epilepsy can be a very disabling illness. The tendency to have recurrent seizures that often strike without warning in the most inopportune moments does understandably impose many restrictions on the person thus affected. Research from across the globe has demonstrated amply that the person with epilepsy experiences diminished opportunity through the lifespan: being less likely to achieve normal levels of education, find an appropriate job, earn suitable incomes, get (or indeed stay) married when compared with his peers. Further, epilepsy is a highly stigmatised condition even today, in both eastern and western cultures.
There are other organisational and scientific pitfalls in developing a novel understanding of the disorder among professionals, caregivers and policy makers. From the organisational perspective, the epilepsy movement spearheaded by people with epilepsy, their families and the professionals who care for them, has over the years strived for people with epilepsy to be considered on an equitable platform with their peers in society, and has succeeded in reducing the stigma of epilepsy considerably. The organisational challenge is, therefore, to address disability in epilepsy with sensitivity and sensibility, in a manner that does not in any way add to the stigma and prejudice that the condition is associated with, even now. The scientific challenge lies in being able to measure disability in epilepsy in a reliable, replicable and valid fashion, using methods that are applicable internationally; that consider the gamut of issues that contribute to disability in epilepsy.
With all this in mind the Indian Epilepsy Association established a working group on Epilepsy and Disability. This working group in collaboration with the TS Srinivasan Centre for Clinical Neurosciences and Health Policy in VHS Hospital, Chennai, held a series of three closed door workshops involving patients and caregivers and a range of epilepsy and disability professionals, including senior members of the Indian Epilepsy Society, the National Trust and a range of disability focussed NGOs. The workshops had international representation from members of the Neuropsychiatry Commission of the International League Against Epilepsy (ILAE).
The consensus reached was “it is not just intractable (uncontrolled) seizures that make epilepsy a disabling illness. A range of associated circumstances including problems with work and relationships, stigma, secondary psychological factors like depression that follow persistent adversity, all contribute to disability in a chronic medical disorder like epilepsy”. The term “Disabling Epilepsy” was therefore adopted to distinguish the condition from non-disabling forms of epilepsy. “Disabling epilepsy is a disorder characterised predominantly by recurrent seizures 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 affected.” This emphasis, in line with the World Health Organization (WHO) bio-psycho-social model of health, moved from the purely medical focus on seizures to role functioning across several life domains. The group concluded that diagnosing disabling epilepsy would require detailed information, going far beyond the seizure episode: physical, psychological, occupational, family, marital, and so on.
The group adopted the World Health Organization’s International Classification of Functioning, Disability and Health (widely called ICF) a multipurpose, biopsychosocial classification which provides a coherent view of the various dimensions of health at the biological, individual and social levels. The ICF uses neutral terminologies and can be applied to every person regardless of their health status, disability, ethnicity or culture, giving it an extremely broad reach in terms of assessing and classifying disability across healthcare disciplines. Not only does this approach render the ICF equitable across health conditions, it does by taking the focus away from disease and diagnosis to disability, reduce stigma of illness, a major barrier to treatment.
Epilepsy is an invisible disability: in between episodes of epilepsy the person can function normally; yet unpredictable and recurrent seizures render him disabled. By assessing body function and structures; activities and participation; environmental factors and personal factors that impact either positively or negatively on disability in the given health condition, the ICF helps the professional assess people with epilepsy comprehensively. Further, clinical experience is that disease diagnosis in general, does not reflect true levels of disability; hence the choice of the disability focused ICF.
In line with its desire for the development of special legislation that is sensitive to the needs of people with disabling epilepsy in India, and elsewhere around the globe, the group compared European, American and Japanese legislation for disability and epilepsy and found German legislation to be comprehensive, equitable, and replicable. In German law, epilepsy falls within the framework of disability legislation, which is regulated as part of general social legislation “Sozialgesetzbuch’.
Disability in epilepsy is graded based on the seizure frequency and severity. Thus even rare mild forms of seizures constitute 50-60 per cent disability; more frequently occurring milder forms without loss of consciousness 60-80 per cent; and frequent seizures as 90-100 per cent disability. Even if seizures cease, the person is considered as disabled as long as he continues taking anti-epileptic drugs. Epilepsy in German legislation is considered “healed” only when the person with epilepsy is seizure-free for three years without medication.
So what privileges does this “disability” status bring with it, in Germany? Some examples are restrictions on employers with regard to terminating services without giving special allowance; more holidays from work; opportunity to seek early pension; tax reductions and breaks; social obligation for large companies to employ disabled people; right to adequate work; prohibition against discrimination; right of inquiry; special facilities and privileges for studying.
In the Indian setting, many of these remain a dream for people with disability (whatever the illness). So what does it mean to have “Disabling Epilepsy” in the Indian setting? While “post-traumatic seizures and epilepsy” have found a place in Indian disability legislation, there are no clear guidelines with regard to their measurement and/or certification. The Indian legislation on disability is “disease and diagnosis focussed” with greatest emphasis on “locomotor disability” as in polio and other neuromuscular disorders. As a consequence, while a number of disorders that co-exist with poorly controlled epilepsy such as cerebral palsy, mental retardation and autistic spectrum disorders find themselves in the disability schedule, having epilepsy alone, even severe forms of epilepsy, is not clearly defined as being a disability. Further, Indian legislation relies heavily on subjective definitions of “greater than 40 per cent” or “greater than 70 per cent” disability, which are are difficult to validate across clinical settings.
Disabling Epilepsy thus exemplifies the problems of disability legislation in India. The disease-focussed approach favoured by the Indian authorities is leading to the exclusion of people with disorders such as epilepsy, even though they may be truly disabled by their condition. This also results in a range of patient organisations clamouring for inclusion in the disability schedule, making the process unsustainable for a developing nation. The “Disabling Epilepsy” paradigm presented herein exemplifies the possibility of a more scientific and valid disability focussed approach to disability assessment and certification, as also the erroneous nature of the currently prevalent disease diagnosis focus. Needless to say, disability measurement and certification for conditions like epilepsy must be voluntary (the person should decide whether he would like to be assessed and when) and repetitive, giving people with treatable conditions like epilepsy the opportunity to exit from the disability list, once they become non-disabled, thanks to advances in medical care.
Disabling Epilepsy is thus an illustrative paradigm that the Indian policy maker would do well to draw upon in developing disability legislation for the generations to come.
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Certain key focus areas that render epilepsy disabling but are ignored in treatment were identified during these workshops:
The fear of seizures and the attendant restriction in activity across the lifespan resulting in the denial of a range of opportunity.
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.
Poor educational and occupational attainment across the lifespan resulting in significantly diminished achievement and attendant disability
Diminished social achievement across the lifespan: limited peer group interactions, lower potential for marriage, normal family life and relationships
Considerable financial burden of disabling epilepsy across lifespan
Consideration of these factors should become regular practice in assessment of people with epilepsy as should interventions that reduce their impact.
The writer is Director, TS Srinivasan Chair and Senior Consultant, The Institute of Neurological Sciences- VHS Hospital, Chennai and Chairman of the Commission on Neuropsychiatric Aspects, International League Against Epilepsy. E-mail: email@example.com
6 months ago