Four entities that group the pharmaceutical industry, health professionals, and patient associations have signed a European Charter demanding greater continuity of care for those living with rare and complex epilepsies.
Specifically, the "Charter of Rights for Continuity of Care in Rare and COMPLEX Epilepsies" has been signed by the laboratories Jazz Pharmaceuticals and UCB Pharma, along with the non-profit organizations Epilepsy Plus Alliance - E+A and International Bureau for Epilepsy (IBE). The initiative and its funding have been assumed by the two pharmaceutical companies.
In this way, the promoters of the document emphasize "the urgent need for greater continuity of care for people living with this type of epilepsy." They highlight that there are "significant shortcomings" that many people and their families face "during the transition from pediatric healthcare services to adult services."
"The transition from pediatric care to adult care in patients with rare and complex epilepsies is often a time of uncertainty and stress for caregivers, patients, and doctors responsible for their care, during which multidisciplinary support is interrupted, leading to worse outcomes and greater risks," explained the director of the "Epilepsy Program" of the Pediatric Neurology Department of the Hospital Sant Joan de Déu (HSJD) in Barcelona, Dr. Alexis Arzimanoglou.
In his opinion, "when continuity of care is provided as a planned process throughout life, better outcomes and a higher quality of life are achieved." "Continuity of care is not a luxury, but a guarantee of protection and must receive the corresponding funding," he stated.
"People living with rare and complex epilepsies should not have to fight for continuity of care every time they reach a new stage of life," asserted, for her part, the president of the Spanish Federation of Epilepsy (FEDE) and of the European Regional Executive Committee of the IBE, Elvira Vacas Montero, who added that "the right of a child to receive quality care must become the right of an adult to receive quality care."
FIVE OUT OF EVERY 10,000 EUROPEANS SUFFER FROM ONE OF THESE DISEASES
As has been emphasized, the letter "is a call to healthcare systems to ensure that no one is left behind simply because they are aging." All this in a context where around five out of every 10,000 people in Europe live with rare and complex epilepsies, chronic pathologies defined not only by epileptic seizures but also by intellectual disability and behavioral and psychiatric disorders, in addition to other health and social needs.
For these patients, adequate care throughout life involves going beyond the clinical approach and integrating issues such as education, mental health, social inclusion, and ongoing support for families. At the same time, their needs change and they face new challenges, including the possible loss or modification of support from their caregivers.
"Due to the decentralized healthcare system in Spain, the national implementation of any process or procedure is extraordinarily difficult and the services aimed at people with rare and complex epilepsies are not very well coordinated," explained the secretary of the Epileptic Encephalopathy with Continuous Spike-and-Wave during Sleep (POCS-SWAS), Joanne Parker, who added that this is "a real problem during the transition."
In this regard, she emphasized "the need for collaboration between different services," something she considers "fundamental." "This letter aims to change this situation," and that "we need care continuity to be predictable, coordinated, and subject to clear accountability, regardless of where people live," she concluded.