By 2031Italy will have to equip itself with one Law to protect people with epilepsy. Currently, four bills are being discussed in the Senate and the hope is that the final one will incorporate the main requests made by people with epilepsy and presented today on the occasion of an event promoted by the Vice President of the Senate of the Republic, Licia Ronzulliprecisely with the aim of collecting concrete and objective data on the incidence of the pathology, supporting the National institutions in the development of first specific law on the matter.
«We hope that the future Law on Epilepsy will soon become a reality by managing to include various aspects, currently missing within the bills under discussion in the Senate, aimed at reducing the impact of the pathology on people with epilepsy and their caregivers and at reversing discouragement towards the future, especially with regard to the normal conduct of personal and working life”, he declared Pink BrainPresident of Italian Epilepsy Federation (FIE).
What do those suffering from epilepsy (and those who care for them) ask
The requests emerged from the investigation promoted by Italian Epilepsy Federation (FIE), in collaboration with IQVIA and with the unconditional support of Angelini Pharma, which measured the impact of epilepsy on the daily lives of people affected by this pathology, including families and caregivers. First of all, it requires the fight against social exclusionthe simplification of bureaucracythe specific training of school staffThe strengthening of dedicated centers and the recognition of the figure of caregiver.
«It is precisely through the survey carried out on the needs of those who suffer from it and their caregivers that we realize how heavily epilepsy affects the daily lives of people who are affected by it and of those who are called to take care of them», he stated there Vice President Licia Ronzulli. «The institutions' task is to intervene to take care of these difficulties. It is no coincidence that I presented a bill to protect people with epilepsy and to ensure their relational, educational and work inclusion paths. A great sign of attention is demonstrated by the fact that other regulatory proposals also exist in Parliament, to arrive as soon as possible at a measure that is bipartisan and represents a helping hand towards people with epilepsy, their families and those who care for them”.
The identikit of the pathology in Italy
In Italy, they are 550 thousand people with epilepsy, of these approximately 1 in 4 takes more than 3 medications for crisis control, significantly impacting patients and families from a social, health and economic point of view.
According to what emerged, approximately 2 out of 3 respondents they report having Seizures despite the treatments and the almost all of the survey respondents (88%) states that epilepsy significantly interferes with one's daily lifein the relational, work, school and leisure fields.
The management of care is also problematic children and boys in school environmentsince only in 17% of cases the school staff ensures administration and that only in 1 in 3 cases parents can access the Institutes to directly provide administration.
Furthermore, there is much room for improvement care and management services: The 54% are satisfied with how they are followed by healthcare personnelbut 72% say they are dissatisfied for waiting lists for visits and checks. Furthermore, theaccess to diagnosis and treatment services of epilepsy is uneven across the national territory: if in the North the 34% of those interviewed express high satisfaction For waiting time of visits and checks, the value drops to 19% in the case of residents in the South and on the Islands.
The problems regarding logistical aspects are also particularly significantwhich are confirmed as more critical in the South: only 21% of residents in the South are satisfied with the distance from the centre to go for checks, compared to 36% of patients living in the North.
Epilepsy in school and in the world of work
From a social point of view, there are many difficulty of those who live with the pathology and who manage to access the job market (41% vs 62% of the Italian average) due to the negative impact on professional life, but also of existing critical issues in terms of professional growth and career prospects. People with epilepsy, families and caregiver they then agree on need to allocate more resources For information and training activities of the school staff and in workplaces to reduce stigma and ensure greater safety and protection in extra-family contexts.
The proclaimed importance of caregiver
The last aspect analyzed by the investigation is recognition of the role of caregiver: 95% of people with epilepsy live with a family or cared for caregiver for the management of the pathology and normal daily activities. Nonetheless, Specific protections are still lacking, economic and psychological for the caregiver who often find themselves in the position of making sacrifices in the workplace to take care of the person with epilepsy.
Ultimately, many and shared expectations of services: from psychological support for people with epilepsy and their families, to availability of healthcare personnel in case of emergencyto the services of support for bureaucratic aspects until the creation of greater opportunities for discussion between patients and families.
Source: Vanity Fair
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