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We rise by lifting others

nec_background

National Epilepsy Centre (CECP-NEC) is the holistic epilepsy management arm of the Comprehensive Epilepsy Control Programme of Pakistan (CECP). Located at Jinnah Postgraduate Medical Centre (JPMC), Karachi, Pakistan CECP-NEC is a public-private partnership project approved by The Federal Government of Pakistan; under a signed MOU between JPMC and Neurology Research & Patient Welfare Fund (NGO; Registration No: DSW-360, dated 12-03-1989). CECP-NEC is the prime project of the NGO. This NGO owned and run centre is operational since April 2007. CECP-NEC is the only epilepsy-designated tertiary care centre in Pakistan for its 2.2 million People with Epilepsy (PWE). Run by volunteers only, CECP-NEC project is financed through public donations and includes 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 with the Federal Bureau of Revenue. 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 (established and published data; 1987). Although it is a treatable disorder and can be well controlled in 80% with antiepileptic medicines, only 2% of the affected rural and 28 % of the urban population were taking medicines before start of CECP-NEC.

Epileptic events are of very short duration (1-2 minutes) and recovery is very fast. The general public cannot fathom the reason for these brief yet intensely dramatic episodes and hence associate it with evil eye, sorcery, witchcraft, being possessed and other similar supernatural causes. Due to deeply rooted socio-cultural misconceptions and 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 care-givers. The stigma is both enacted by the society as well as self-perceived by PWE and their care-takers. With every one PWE, at least 05 people (family members) are indirectly affected. Parents and family members are embarrassed to talk about the condition. Children lose on to education as they are either not sent to school 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 and the PWE has to take medicines regularly and punctually, in the prescribed dose. Like any chronic ailment PWE tend to have low compliance per se but in our country lack of awareness, poor health infrastructure and poverty are the main issues. The medical and social burden of this treatable disorder is massive.

Aims of CECP-NEC

  • To 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 of primary care physicians and neurology postgraduates for better understanding and management of epilepsy to provide near home epilepsy care.
  • Dissemination of updates amongst specialists about epilepsy and decreasing the specialist skill gap in epileptology.
  • To encourage epilepsy-related research.
  • Improve the quality of life of PWE, making them dynamic members of the society and 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 Marium AliMohammad Tabba Foundation; having pledged construction of the entire building. Furnishings, fixtures, and a generator for alternate source of electricity was 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 specialized diagnostics including prolonged video-EEG recording labs, sleep lab, seminar halls for public and medical education and a library.

Holistic Epilepsy Management

It covers total medical, social and psychological aspects of every PWE. All are managed by qualified volunteer neurologists under the supervision of Emeritus Professor of Neurology, JPMC. PWE are seen in great detail; the first consultation taking minimally 45 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 drug compliance and to address all medical as well as psychosocial issues. Counseling of the affected and their care-takers is an integral part of management. PWE are provided one-month supply of CECP-NEC quality-assured medicines. Electroencephalography (EEG) with video recordings, the main diagnosis-supportive test for epilepsy is performed as per international standards. All EEGs are reported by two volunteer neurologists, trained in epilepsy in America and Australia and all data is archived. JPMC’s radiology department provides their services for neuroradiology. On an average 5 new PWE get registered daily whilst 65 PWE visit each day for a follow up and medicine supply. Patients visit CECP-NEC from all over Pakistan for specialized opinion and treatment; some coming from as far as the remote villages of KPK and Gilgit-Baltistan.

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

Achievements of CECP-NEC

Success of awareness campaign has been gauged by a repeat population-based study 5 years after the start of intense and sustained awareness projects. Now 80% of PWE in urban areas are taking medicines. An indirect measure of CECP-NEC’s achievement is the increase in sales of anticonvulsants; with a compound average growth of 15.6% (2000-2018; published data by IMS). With other variables remaining unchanged, CECP-NEC claims this paradigm shift was possible only through mass public awareness created about epilepsy.

Prof. Hasan Aziz, Emeritus Professor of Neurology, JPMC and Founder & President of the NGO and its epilepsy-related projects, has been conferred with Ambassador for Epilepsy Award by the International League against Epilepsy (ILAE) and Outstanding Epilepsy Achievement Award by ILAE’s Commission on Asian and Oceanian Affairs for his contributions towards epilepsy in Pakistan and the international epilepsy community.

In recognition of her tremendous contributions towards epilepsy in Pakistan and the region, ILAE’s Commission on Asian and Oceanian Affairs awarded Dr. Zarine Mogal Outstanding Epilepsy Achievement Award. Dr. Zarine is the Secretary of NRPWF and Epilepsy Support Pakistan (IBE-Full Chapter), President of Epilepsy Association of Pakistan (ILAE Pakistan Chapter) and member of Asian Epilepsy Academy – ASEPA, the educational wing of ILAE-Asia Oceania (second term).
  • ILAE, Developing Countries and the Treatment Gap – Pakistan among the first few countries to report in 1988
  • Conquering the Treatment Gap: Pakistan starts small, stays flexible and never gives up.

Our Mega Achievement

Pakistan’s most respected social worker Mr. Abdul Sattar Edhi, whose social services extend to about 30 other countries made a written declaration to CECP in 2003, to be made public, that he had epilepsy since his youth and with regular medicines his epilepsy was well under control and did not hamper his social welfare work.

Mr. Edhi who is comparable to Mother Teresa; the diversity and quantum of his social work being many times more than the latter, is an icon for the PWE in Pakistan. He has brought hope and confidence in them and their families. Mr. Edhi was a great supporter of CECP and graciously appears in our various print and electronic awareness campaigns. He took time off from his extremely busy schedule to visit us at the National Epilepsy Centre to support and encourage PWE, in person.

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PHOTO GALLERY

Mr. Abdul Sattar Edhi at National Epilepsy Centre

April 28, 2010 – Karachi

The internationally renowned and most recognizable social worker Mr. Abdul Sattar Edhi came to visit CECP-NEC. Having epilepsy himself he interacted with the patients at the centre and encouraged them to keep taking anti-epileptic drugs regularly.

 

Fundraiser for National Epilepsy Centre - Recognizing a Decade of Dedication

March 31, 2018 – Karachi

CECP-NEC completed its ten years since it first open doors for people with epilepsy from all walks of life. This was celebrated with a special fundraiser event.  A dinner cum musical night paying tribute to the golden era of Pakistan’s film music was held at Indus Valley School of Art & Architecture (IVS). Singers Salman Alvi, Waseem Baig, Karam Abbas, Rosemary, Ashfaq Hussain and Wahab Khan performed live with a 15-piece orchestra.  The audience was enthralled by the singers with addition of a flavour nostalgia by video projection of the original song songs simultaneous. Prof.  Hasan Aziz President, NRPWF, Ms. Suhaee Abro an artist with epilepsy and NEC’s ambassador spoke on the occasion. Dr Zarine Mogal gave a vote of thanks. Door prizes and Lucky dip draws were announced. The proceeds of this well-attended and successful event, went to CECP-NEC for patient management. This event was majorly organized by Mrs. Shanaz Ramzi and her team at StarLinks gratis.

Press Conference with NEC Ambassador – Nadia Jamil

February 15, 2018

A press conference was held at Najmuddin Auditorium, Jinnah Postgraduate Medical Centre by National Epilepsy Centre (CECP-NEC) in collaboration with Epilepsy Support Pakistan (CECP-ESP) to introduce; Ms Nadia Jamil, a renowned TV actor and Ms. Suhaee Abro, classical and contemporary dancer and TV/film actor as ambassadors. A specially produced documentary was also shown that highlighted the working of CECP-NEC. Ms Nadia Jamil spoke at the conference about her own experience with epilepsy and how she overcame obstacle 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 as they are equally able citizens of the society.

Donor’s Visit at National Epilepsy Centre

2009 – Karachi

Our primary donor Mr. Ali Mohammad Tabba with family and friends visited CECP-NEC. They were shown around the various departments of the centre and briefed about their workings. 

National Epilepsy Centre Managing Committee

President
Prof. Hasan Aziz

Vice President
Prof. Shaukat Ali

Co-Head / Secretary
Dr. Zarine Mogal

Treasurer
Dr. Hiba Mahmud

Managing Committee
Mrs. Masuma Lotia
Ms. Mariam Halai
Ms. Firoozeh Mogal
Dr. Lubna Ayub
Prof. Syed Wasim Akhtar
Dr. Abdul Latif Mian
Dr. Uzma Choudhry

Admin Officer
Mr. Muhammad Qadeer

Auditors
T. Ali & Co.

WE NEED
YOUR SUPPORT
Lack of awareness, misconceptions, stigma & marginalization cause more misery than the condition itself. With medical, social & psychological treatment, public awareness to change the public mind-set is necessary. National Epilepsy Centre (NEC). Karachi, operational since 2012 is the only tertiary care centre in Pakistan exclusively for holistic epilepsy treatment, education, research and public awareness.
FLYER-POPUP
OUR WORK
ACKNOWLEDGED INTERNATIONALLY

Our landmark paper, Epilepsy treatment gap and stigma reduction in Pakistan: A tested public awareness model was published in a reputable medical journal in end Dec 2019. The paper was received with accolades from entire medical especially neurology community for its groundbreaking approach towards reduction of treatment gap in a poorly resourced country.