National Epilepsy Centre

National Epilepsy Centre (CECP-NEC) is the professional arm of the Comprehensive Epilepsy Control Programme of Pakistan (CECP) for holistic epilepsy management, education of professionals, and research. Located in the premises of Jinnah Postgraduate Medical Centre (JPMC), Karachi, Pakistan CECP-NEC is a public-private partnership project approved by the Ministry of Health, Government of Pakistan, under a signed MOU between JPMC and the NGO, Neurology Research & Patient Welfare Fund (NRPWF).  

CECP-NEC has been the prime project of NRPWF in the last two decades. This NGO-owned and run centre has been operational since April 2007. CECP-NEC is the only epilepsy-designated tertiary care centre in Pakistan for the country’s 2.2 million people with epilepsy (PWE). Run by volunteers only, the CECP-NEC project is financed through public donations and includes the construction of the building, furnishings, equipment, administrative and other operational expenses. The government provides electricity and water. All accounts are audited by honorary Chartered Accountants with annual submission to the Federal Bureau of Revenue by the NGO’s tax advisor. It is a national institution covering all four provinces of Pakistan. 

Background

Epilepsy is a common neurological disorder that affects 1% of Pakistan’s population (published population-based study; 1987). Although it is a treatable disorder and can be well controlled in 70% with anti-seizure medicines (ASMs), only 2% of the affected in rural and 28 % in the urban population were taking antiseizure medicines before the start of CECP-NEC. 

Epileptic events are of short duration (1-2 minutes) and recovery is fast. The public cannot fathom the reason for these brief yet intensely dramatic episodes and hence associate it with an evil eye, sorcery, witchcraft, being possessed, and other similar supernatural causes. Due to deeply rooted socio-cultural misconceptions and a lack of awareness about epilepsy, it tends to remain medically untreated. PWE are highly stigmatized and are avoided by the public like lepers causing added misery to the affected and their caretakers. The stigma is both enacted by society as well as self-perceived by PWE and their caretakers. At least 05 family members are indirectly affected with each PWE. Parents and family members are embarrassed to talk about the condition. Children lose out on education as they are either not sent to school, not granted admission, or removed from school. PWE remain unemployed or underemployed and those of marriageable age (especially females) do not find a suitable partner. 

Medical treatment of epilepsy is long-term. A PWE must take medicine regularly and punctually, in the prescribed dose. Like in any chronic ailment, low compliance is often seen, and lack of awareness, poor health infrastructure, and poverty in our country augment the issue. The medical, social, and economic burden of this treatable disorder is massive. 

Aims of CECP-NEC

• Provide holistic management to all PWE irrespective of their religion, caste or creed; especially those from low socio-economic strata.

• Creating public awareness about this treatable medical condition amongst the masses.

• Training primary care physicians and neurology postgraduates for better understanding and better near home management of epilepsy.

• Continued Medical Update of specialists about epilepsy.

• Decreasing the specialist skill gap in epileptology

• Encourage epilepsy-related research.

• Improving quality of life of PWE, making them dynamic members of society.

• Changing the public’s mind-set about this highly misunderstood medical disorder.

CECP-NEC works in tandem with Epilepsy Support Pakistan (CECP-ESP) for all awareness activities.

The Architecture

Construction of this purpose-built ground plus two storey building began in 2003 through the generous donation of Maryam AliMohammad Tabba Foundation; having pledged construction of the entire building. Furnishings, fixtures, and a generator for alternate sources of electricity were made through gracious contributions of other donors who wish to remain anonymous. The Cowasjee Foundation through their kind donation has set up two state-of-art electroencephalography (EEG) labs and continues to contribute towards its maintenance. Presently CECP-NEC houses outpatient epilepsy clinics, EEG labs for routine EEGs with video recordings, a drug bank and secretariats of the NGO as well as that of Epilepsy Association of Pakistan (ILAE-Pakistan Chapter) and Epilepsy Support Pakistan (IBE-Pakistan Full Chapter).

Future projects include the development of the first and second floors with specialized diagnostics including a prolonged video-EEG recording lab, units for inpatient management of difficult to treat epilepsies, seminar halls for public and medical education, and a dedicated research unit with a digital library for epilepsy research. Structural work is currently 80 percent completed on the first floor.

Holistic Epilepsy Management

It covers complete medical, social and psychological aspects of every PWE. All are managed by qualified volunteer neurologists. PWE are seen in great detail; the first consultation takes minimally 45-60 minutes with filling of a 40 paged structured pro forma. Patient records/files are well maintained and archived electronically too. A strict, close and regular follow-up is done on a monthly basis to ensure good ASM compliance and to address all medical and psychosocial issues. Counseling of the affected and their caretakers is an integral part of management. PWE are provided with a one-month supply of CECP-NEC quality-assured ASMs free of cost to the deserving. EEG with video recordings, the main diagnosis-supportive test for epilepsy is performed as per international standards with video recording, a practice only at CECP-NEC in the country. All EEGs are reported by a volunteer neurologist, trained in epilepsy in Australia and all data is archived. JPMC’s radiology department provides their services for neuroradiology. On average, 5 new PWE get registered daily whilst 65 PWE visit each day for follow up and replenishment of ASM supply. Patients visit CECP-NEC from all over Pakistan for specialized opinion and treatment; some coming from as far as the remote villages of the country’s northern mountainous regions of KPK and Gilgit-Baltistan.

A fixed token amount is charged from all patients only to add value to the services provided and for self-integrity of the white collared patients and caretakers.