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We Rise by Lifting Others

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.

Recognizing a Decade of Dedication - Fundraiser for
National Epilepsy Centre
March 31, 2018

A milestone achieved by National Epilepsy Centre (CECP-NEC) was celebrated with a special event cum fundraiser at Indus Valley School of Art & Architecture (IVS). CECP-NEC has completed ten years of dedicated service provision to people with epilepsy from all levels of society. Dinner and musical night paying tribute to the golden era of Pakistan’s film music was enjoyed by the guests. The Live 15-piece orchestra with foot-tapping performances by a group of talented professional singers was accompanied by a simultaneous screening of the original songs, enhancing the nostalgia quotient. Professor Hasan Aziz introduced NEC and its work to the audience. NEC’s ambassador for epilepsy Ms. Suhaee Abro spoke about living with epilepsy and Dr Zarine Mogal gave the vote of thanks. Door prizes and lucky draws added more excitement amongst a well-attended crowd. The proceed of this successful event helped NEC in its service to people with epilepsy. 

Visit to National Epilepsy Centre
Suhaee Abro, NEC Ambassador for Epilepsy
March, 2018   

Ms. Suhaee Abro, classical/contemporary dancer, and TV/film actor visited National Epilepsy Centre (NEC) on becoming NEC’s   Ambassador for Epilepsy and recording her interview where she talks about epilepsy and how she coped with this disorder. 

Press Conference with NEC Ambassador for Epilepsy
Ms. Nadia Jamil
February 15, 2018

A press conference was held at Najmuddin Auditorium, Jinnah Postgraduate Medical Centre by National Epilepsy Centre (NEC) in collaboration with Epilepsy Support Pakistan (ESP) to introduce Ms. Nadia Jamil, a renowned TV actor/activist as their Ambassador for Epilepsy. A specially produced documentary was also shown that highlighted the work of NEC. She spoke about her own experience with epilepsy and how she overcame obstacles to achieve her dreams. The press conference highlighted the message that epilepsy is a treatable disorder and people who suffer from it must not be stigmatized and discriminated against as they are equally able citizens of society. 

Mr. Abdul Sattar Edhi Visits National Epilepsy Centre
April 28, 2010

Internationally renowned and most respected humanitarian and social worker, Mr. Abdul Sattar Edhi, visited CECP-NEC. Having epilepsy himself, he interacted with the patients at the centre and encouraged them to be regular and punctual in taking medicines. He graciously took time from his busy schedule to record his statement on epilepsy, to be used in NEC’s awareness documentary. 

Donors Visit National Epilepsy Centre
2009

Our main donors Mr. Ali Mohammad Tabba and Mr. Ahmed Tabba of Mariam Ali Mohammad Tabba Foundation visited CECP-NEC. They were shown around the various departments of the centre and briefed about their workings.