Antigua and Barbuda Epilepsy Week March 25 – 30, 2019

ANTIGUA AND BARBUDA EPILEPSY WEEK MARCH 25 – 30, 2019

Theme: “Empowering Persons with Epilepsy, their families and their love ones.”

Hosted by the Ministry of Health and the Environment in collaboration with the Medical Benefits Scheme (MBS) and the Mount St. John’s Medical Center (MSJMC). 

DESCRIPTION AND GOALS:

According to the World Health Organization, epilepsy affects 50 million persons worldwide and 1 in 26 persons will develop it at some point in their lives. Yet, this condition can still instill fear, misunderstanding and discrimination.

“Epilepsy Week” is a selected week of intensified activities to raise public awareness through education. It is also a critical period to have large scale epilepsy clinics, identify needs, clear misunderstandings, reduce stigma and empower patients with epilepsy and their families.

This year, Antigua and Barbuda celebrates its 3^rd Epilepsy Week, after its inauguration in November 2015.

The Ministry of Health, Wellness and the Environment of Antigua and Barbuda forms strategic partnerships with international and regional members of the league against epilepsy, local stakeholders and private donors to bridge the gaps in the care of persons with epilepsy.

This is congruent with our national goals for health, which are to empower individuals and families to manage their own health, strengthen health systems and community support mechanisms and expand strategic partnerships.

MAIN COORDINATING TEAM:

MINISTRY OF HEALTH AND THE ENVIRONMENT:

Hon. Molwyn Joseph, Minister of Health and the Environment

Dr. Rhonda Sealey-Thomas, Chief Medical Officer

Dr. Joycelyn Walter-Thomas, MD FAAP (Consultant Pediatrician- Epilepsy Week Coordinator)

Ms. Samantha Moitt, Chief Nutrition Officer

Nurse Margaret Smith, Principal Nursing Officer

Nurse Philipa Roberts, Superintendent of Public Health Nursing (SPHN)

Nurse Almarie Coates, Deputy SPHN

Mr. Adlai Carrott, Manager of Communications

Ms. J’Noure Smith, Communication Officer

GOVERNMENT OF ANTIGUA AND BARBUDA CONSULATE GENERAL NEW YORK:

His Excellency Dr. Walton Aubrey Webson, Ambassador Extraordinary Plenipotentiary, Antigua and Barbuda’s Permanent Representative to the United Nations

MOUNT ST. JOHN’S MEDICAL CENTRE (MSJMC):

Dr. Albert Duncan, Medical Director

Dr. Vonetta George-Nanton, Deputy Medical Director Ag.

Mr. Gary Thomas, CEO

Nurse Jacqueline Jno-Baptiste, Nursing Director (ND)

Nurse Patrician Thomas, Deputy ND

Mrs. Kerri-Ann Bramble-Browne, Outpatient Department Administrator

Nurse Andrea Best, Outpatient Department Nurse Manager

Ms. Salma Crump, Head of Marketing and Communications

Consultant Pediatricians: Dr. Claudine Richardson & Dr. Shivon Belle Jarvis

Consultant for Internal Medicine: Dr. Jason Belizaire

Consultant for Obstetrics and Gynecology, Head of Department: Dr. Raymond Mansoor

Nurse Kesha Willock, RN, EEG Technician

Ms. Carol Scholar, Administrative Assistant

MEDICAL BENEFITS SCHEME (MBS):

Mr. Kevin Silston, CEO

Dr. Bevon Matthias, Director of Health Care and Wellness Services

Dr. Janelle Charles-Williams, Manager, Marketing and Communications

MINISTRY OF EDUCATION, SCIENCE AND TECHNOLOGY:

Mr. Clare Browne, Director of Education

Mrs. Andrea Airall, Education Officer

Ms. Joy-Ann P. Harrigan, Education Officer Special Needs

ANTIGUA AND BARBUDA MEDICAL COUNCIL:

Dr. Vonetta George Nanton, Chairperson of the Antigua and Barbuda Medical Council

Nurse Cicely Dorsett, Registrar

Ms. Iola Moses, Registrar Assistant/ Secretary

THE HALO FOUNDATION

Her Excellency Lady Sandra Williams

PRIVATE PHYSICIAN

Dr. Edda Hadeed, Pediatrician

EPILEPSY WEEK PROGRAM ORGANIZING COMMITTEE:

Dr. Joycelyn Walter-Thomas, MD FAAP, Consultant Pediatrician; Principal Epilepsy Week Coordinator

Dr. Rhonda Sealey-Thomas, Chief Medical Officer

His Excellency Dr. Walton Aubrey Webson, Ambassador Extraordinary Plenipotentiary, Antigua and Barbuda’s Permanent Representative to the United Nations

Dr. Vonetta George-Nanton, Deputy Medical Director Ag.

Mrs. Kerri-Ann Bramble-Browne, Outpatient Department Administrator, (also managed clinic esthetics)

Ms. Salma Crump, Head of Marketing and Communications, (also provided donated T-Shirts in support of Epilepsy Awareness)

Prof. Dave Clarke- Director, Clinical Epilepsy, Texas Children’s Hospital, Baylor College of Medicine, Advisor for Epilepsy Week

SPONSORS:

Ministry of Health, Wellness and the Environment

Mount St. John’s Medical Centre

Medical Benefits Scheme

The Antigua and Barbuda Venice Biennale Fund of Tides Foundation, advised by Barbara Paca OBE, PHD., Cultural Envoy to Antigua and Barbuda, through the Tides Foundation

International Child Neurology Association (ICNA)

Child Neurology Society (CNS)

MEDIA:

ABS Television: Antigua and Barbuda Today

Observer Radio: Perspectives with Dave Lester Payne

ZDK radio: Pre- Epilepsy Week 2019 Interview

VISTING TEAM:

Prof. Dave Clarke- Child Neurology, Epilepsy and Sleep, Baylor, Texas Children, Advisor for Epilepsy Week, CNS sponsored

Prof. Sheik Amza Ali- Adult Neurology, Epilepsy, Jamaica/ Canada; President of the Epilepsy Society of the Caribbean

Dr. Susanna Bortolusso Ali- Pediatrician/ Sickle Cell Educator, Jamaica/ Canada

Mr. Keith Morgan- EEG Technician, CEO Neurotech LLC. USA

Dr. Toni Nicholls- Neuropsychologist, Barbados

Ms. Lauren Kronisch- Dietitian, Texas Children, ICNA sponsored

ACTIVITIES:

EPILEPSY WEEK 2019 COMMENTS AND FEEDBACK:

Highlights:

Kesha Willock RN, a recently trained EEG technician returned to Antigua in 2019 and received additional training provided by EEG technician and trainer Mr. Keith Morgan on the first 2 days of clinic. This went well as our EEG nurse independently performed EEGs for the 2 final clinic days

The EEG equipment utilized in training was donated to the Ministry of Health, Wellness and the Environment, to be used at MSJMC. This was procured by Mr. Keith Morgan and Dr. Dave Clarke. The value of this equipment exceeds $40, 000 USD. A formal handover was not possible due to unavoidable changes in travel plans and the arrival of the EEG equipment just in time for training, on day 2 of the planned activities.

The week had a strong educational component. Activities were integrated around patient X. Patient X is an adolescent with Focal Onset Epilepsy since she was 8 months old and has a mesial temporal lesion associated with prolonged febrile seizure in infancy. She also has disorders in learning and memory and often faces discrimination and bullying at school.

Education:

School Session: Learning with Epilepsy at Irene B Williams Secondary- Students and Staff Education. This activity was chosen to educate the teachers and students of this school about epilepsy in order to decrease stigma and discrimination. Patient X attends this school and face challenges with bullying and discrimination in class.

This event was well supported, students engaged with multiple questions which showed a good knowledge base. Bullying was addressed by Neuropsychologist Dr. Nicholls and stigma, associated learning difficulties and acute seizure management were discussed at length. Feedback from patient X indicates that one of the persons who used to bully her now offers to assist her, but the problem continues

Nurses Session: Epilepsy and Patient Care- supported by nurses from the community and the MSJMC. Nurse specialty care in Epilepsy was highlighted. Better attendance and technical support could have been garnered but this activity coincided with some mandatory training sessions in the hospital. It was nevertheless a very interactive and fruitful session.

Teachers Session: Epilepsy in the Classroom. This was well represented from different levels of educators in the Ministry of Education and turned out to be a great learning experience for all

Physician Talk: Then I Forget. This was a well-organized case presentation. CME- 1 credit was awarded for this activity. Important updates were given on the new definition of epilepsy

Dietitian Session: Background of the diet, basic overview of the types of diets, modified Atkins diet, medical management of the diet and case studies were presented. This was the foundation talk for future case management and further exchanges between local dietitians and our international partners.

Outpatient feedback:

For patients that are referred to the Epilepsy Clinic, their charts are reviewed and triaged by a consultant in Internal Medicine and Pediatricians at MSJMC. This helps with the organization and care prioritization. It may also help this process, if additional patients who are referred but not seen in the current visit may have chart reviews and neurology input in the triage for upcoming visits.

This suggestion was taken, and chart reviews were done in the outpatient department on day 1 of activities

2 clinic days were assigned to each specialist: 1 Pediatric & 1 Adult Neurologist/Epileptologist

Patients seen within the 4 days of specialty clinics:

Total number of neurology visits: 48 (Pediatric- 26; Adults-22); 12 EEG reading and interpretations

Total number of EEGs performed: 12

Neuropsychology assessments: 2

Inpatient consults- 2

Total number of patients who did not attend clinic appointment: 11

Additional suggestions:

Persons with epilepsy of various age groups, should share their lived experience as a part of a patient centered model. Aim to reduce stigma.

This will be on the main agenda during the next Epilepsy week, with a ‘Persons with Epilepsy and Family’ social gathering

Form an Epilepsy Association of Antigua and Barbuda

a relative of a person living with epilepsy expressed her desire to be a founder

Instructions on how to develop an effective peer support group

Dr. Toni Nicholls will take the lead in these efforts

Develop a directory of local and regional resources and online resources

This will be developed by Dr. Joycelyn Walter-Thomas with input from the Epilepsy Society of the Caribbean, a returning Adult Neurologist, and the other educational participants involved in Epilepsy Week

Implementation of Dietary treatment for Epilepsy

A dietitian trained in the dietary treatment of epilepsy, will plan an implementation week with prior food preparations and evaluation of the local diet

Add social work perspective to upcoming Epilepsy Week

This will be mediated with the lead Social Worker at MSJMC

Look at policies for driving with epilepsy, driving with epilepsy in pregnancy and driving in the elderly

This will be coordinated through the MAAB

Investigate the reason why patients miss appointments

Continued EEG interpretation was requested

This is in the process of being organized by Mr. Keith Morgan and Dr. Dave Clarke

Continued EEG Technologist education was requested

Continued EEG education and oversight will be spearheaded by Mr. Keith Morgan

Pediatricians, other primary care Physicians and members of the public requested access to Neuropsychological evaluations

An Antiguan interested in Neuropsychology and Epilepsy observed the educational activities. She will be mentored by Dr. Toni Nicholls for 6 months in Barbados, then will return to Antigua with Psychometry expertise. There will be continued oversight and analysis of the records by Dr. Nicholls