The Caritas Malta Epilepsy Association’s National Conference 2014 has highlighted the profound effect that epilepsy can have on people’s lives, and that this goes way beyond the disability borne of actual seizures. The conference emphasised that stigma in epilepsy caused discrimination, inequality, social exclusion and employment problems and concluded that improvements in employment legislation, access to treatment, education and funding for research were necessary to better the quality of life of persons with epilepsy.
The conference was organised in conjunction with the Department of Clinical Pharmacology and Therapeutics of the University of Malta, with the theme that Epilepsy is more than just seizures. Epilepsy is often a hidden medical condition which requires several varying medical and support services and can greatly affect a person’s social and personal life. There are over 3,000 persons who have been diagnosed with epilepsy in Malta and Gozo.
Addressing the conference, Minister for Education and Employment Evarist Bartolo said that it was important to ensure that children with epilepsy are integrated into the school learning environment and that educators and employers are made more aware of the realities of epilepsy.
A round table scenario was chaired by MEP David Casa, Vice President of the European Advocates for Epilepsy Working Group, while Conference workshops discussed issues including medical needs and how epilepsy nurses can help and address children’s needs.
It also dealt with the mismatch between visible disability and perceived disability which is never greater than for epilepsy, where, for more than 99% of the time, patients are not having seizures and appear to be perfectly well and healthy. Yet the concern that a seizure may occur leads to perceptions of stigma, mood change, avoidance behaviour, lifestyle changes and generally reduced quality of life. This was aggravated by restrictions on driving privileges and society’s limitations to certain aspects of education and employment.
The conference stressed that epilepsy is different and special, and cannot be simply bracketed together with other chronic neurological conditions. Despite advances in understanding and effective management of epilepsy, it remains under a shadow of stigma.
The conference recognised that while epilepsy is a symptom, not a disease, many people with epilepsy find themselves defined by their condition as being “epileptic”, in a way that would appear inappropriate for the symptoms of other conditions such as dementia or pain.
Epilepsy has a low public profile: there are almost no celebrities or people in the public eye disclosing their condition of epilepsy and so, few positive role models for people with epilepsy to follow. There are many conditions that resemble epilepsy (most commonly syncope and psychogenic events) and even epilepsy itself comprises many conditions with many and varied aetiologies.
The emerging genetic basis of some of the epilepsies indicate that epilepsy will eventually be recognised as many thousands of different conditions. Epilepsy management traditionally falls to many different specialties including neurology, psychiatry, paediatrics, general practice, emergency units, and obstetrics. There is no specific test for epilepsy and diagnosis of seizures and the assessment of level of control of seizures depend crucially upon the history. The lack of a specific test means that non-epilepsy conditions are often erroneously treated as epilepsy. Furthermore, with no test available, just taking antiepileptic medication may be enough to imprint the label of epilepsy.
Co-morbidities are very common, especially behavioural changes in children, and anxiety and depression in adults. Antiepileptic drugs are often blamed, although they are not always at fault. It is crucial for patients that their clinicians should maintain an appreciation of the broader aspects of epilepsy and its effects on lifestyle, and to teach trainees to think more broadly than counting seizures, adjusting medication and reinforcing driving restrictions.
The conference was opened by Prof Roger Ellul-Micallef, Head, Department of Clinical Pharmacology and Therapeutics, University of Malta with welcome remarks by Mgr. Carm Farrugia, A/Director, Caritas Malta and Mr. Mario Dimech, President, Caritas Malta Epilepsy Association. The keynote speech was given by Prof Phil Smith, University Hospital of Wales, Cardiff UK while Ms Christine Bennett, Epilepsy Specialist Nurse, UK discussed the role of the epilepsy nurse.
Participants in the round table included Dr. Doriette Soler, Ms. Victoria Dimech, Mr. Matthew Attard, Mr. Frank Portelli and Prof Janet Mifsud, Vice President Europe, International Bureau for Epilepsy.
The proceedings of the conference are downloadable from the Caritas Malta Epilepsy Website http://www.caritasmalta.org/?m=epilepsy&id=39