Les recommandations de bonne pratique de la Haute Autorité de santé apportent un nouveau souffle à la paralysie cérébrale, mais quelles réponses apportent-elles aux familles ?

Abstract

For the first time, the High Authority for Health publishes recommendations for good practice in motor rehabilitation for people diagnosed with cerebral palsy. A simple kick in the anthill or a real helping hand for families? Mum of Léonie, eight years old, suffering from cerebral palsy following a stroke in utero, I bring here my testimony and share my opinion on the subject. Too many families face a lack of listening and knowledge on the ground, which hinders access to rehabilitation favourable to the needs of their children. For lack of sufficient proposals from caregivers, many parents have made the same choice as me: take charge of the rehabilitation of their children sometimes against the advice of health professionals. It is urgent that families no longer have to fight to obtain the best rehabilitation for their children! The recommendations of the High Authority for Health have been published for this purpose. They formalize the crucial need for appropriate rehabilitation and rapid implementation after diagnosis. However, if they recommend certain methods and value the intensive, they come up against an obvious lack of scientific studies which does not always allow them to bring sufficiently refined conclusions. Finally, for families and therapists to find themselves united in the field of rehabilitation, the context of care for cerebral palsy must absolutely evolve and medical research must develop. The recommendations call for new projects!