(Adnkronos) - “La parte normativa è fondamentale per generare una presa in carico corretta, sia in età pediatrica sia in età adulta. Serve urgentemente il riconoscimento di tutte le forme di epilessie rare e complesse. Solo alcune sono riconosciute nei Lea”, cioè i Livelli essenziali di assistenza. Così, Isabella Brambilla, presidente Alleanza per le epilessie rare e complesse, intervenendo all’incontro dal titolo ‘Oltre l’Epilessia: le sfide delle epilessie rare e complesse".
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00:00What are the needs of these patients?
00:04The needs of these patients are many,
00:07because they are very complex pathologies,
00:10and they concern not only epilepsy, which is one of the symptoms,
00:13but we have several difficulties,
00:15especially cognitive and behavioral,
00:17disorders of movement and language,
00:19so we need a multidisciplinary team.
00:22Today, in Italy, we are lucky,
00:25the best therapeutic options are available,
00:28compared to other European countries where this does not happen.
00:31However, there is a lack of integrated care,
00:34especially with regard to psychological support for families and patients,
00:39and above all a continuity of care,
00:41both in the pediatric stage, where there is a good coverage of services,
00:45but there is totally a lack of coordination,
00:48especially for the adult age.
00:50The transition is a very crucial element,
00:54because it is not only about moving from pediatrics to the adult doctor,
00:59but there is a lack of a coordination team that can best follow this patient,
01:03because the needs change.
01:05It is not only the pediatric aspect,
01:08it is a body that changes, it is an adult that grows,
01:11and that also needs other supports.
01:13In addition, there is a lack of what is a fundamental element.
01:17In the teenage years or the pediatric age,
01:20we have a great element, which is school,
01:23which is a strong inclusive element,
01:26which allows children to live with normality
01:29and with the children of their peers.
01:32This is lacking in the adult age,
01:34together with needs that grow,
01:36and we have frustrations because there are no life projects
01:39that can guarantee an adequate inclusion in society.
01:43So frustration then generates psychological disorders that worsen
01:48and even psychiatric problems,
01:51which is a significant burden for all the families that manage these patients.
01:55In rare and complex epilepsy,
01:57we must emphasize that they need H24 surveillance.
02:01These patients can have crises day and night,
02:05there is a high risk of SUDEP,
02:07so the weight of the family is a global management.
02:10It is added that institutions are not often ready
02:13to welcome these children with epilepsy.
02:16There are barriers for school,
02:19for sports activities,
02:21where epilepsy is still a strong element of exclusion from play.
02:26So the burden of the family is significant,
02:29especially because crises are frequent.
02:33Despite the drugs, you can't control crises,
02:36so crises can come at any time.
02:39We must say that it is essential to underline
02:42that crises often generate falls.
02:45So in addition to the risk of not stopping,
02:48so of having to arrest them,
02:50there is also an emergency management
02:52in case of a fall and need for emergency assistance.
02:56We also have crises that are not arrested,
02:59with bad conditions,
03:00so the need for hospitalization.
03:03So the burden of the family is really important.
03:07There is a need for more support for the caregivers.
03:10Very often it is the mothers who give up their careers
03:13to work to take care of their children,
03:15but with the age of adulthood,
03:17all this becomes even heavier
03:20and becomes difficult to manage.
03:23So the need for targeted interventions
03:26in support of the family nucleus is urgent.
03:28The normative part is essential
03:30to really generate a correct takeover
03:33both in the pediatric age and in the adult age.
03:36The recognition of all forms of rare and complex epilepsy is urgently needed.
03:41Only a few are recognized in ILEA
03:43and we hope that the procedures,
03:46together with the tariff,
03:47will be approved soon
03:48and will give dignity and recognition of the appropriate path.
03:52The other major path is the draft law on epilepsy.
03:55It would be a fundamental element
03:57to recognize all patients affected by epilepsy,
04:00not only rare forms,
04:01and to provide protection to the appropriate and homogeneous paths
04:05throughout the Italian territory.
04:06So we really need to make an effort here
04:09so that the patient can be followed
04:11close to the home where they live.
04:14We also have the provisions
04:18that are coming out in support of the caregivers
04:21with the Ministry of Disability
04:23and the approval of the Observatory for Epilepsy.
04:28I believe this is a fundamental element
04:30to coordinate and monitor all activities
04:34to protect the paths for people with epilepsy.
04:37We hope that the approval will come soon.
04:39A first step has been taken,
04:41but all this would give dignity,
04:43appropriate paths,
04:44and care for a patient
04:47who can achieve the best possible quality of life.