1404 Education health care plans for children with mitochondrial diseases

Résumé fourni par la source

Background Mitochondrial diseases are a heterogeneous group of disorders in which the cells of the body have difficulties producing energy. They are the most commonly inherited neurometabolic illness of childhood affecting at least 1 in 5000 children. Mitochondrial diseases can cause a plethora of symptoms including developmental delay, hearing loss, visual impairment, seizures, strokes, neurodisability, fatigue and growth faltering amongst many other symptoms. The condition can significantly impact on a child’s ability to develop, learn and function. The Education Health and Care Plan is for children and young people aged up to 25 years who need more support than is available through special educational needs support. The plan sets out the educational, health and social needs of the child and how those needs will be met. It is not uncommon for those children with rare disorders not to have EHCPs in place which could impact on the long-term ability to achieve their full academic potential. Objective To review the children attending the NHS Highly Specialised Services for Rare Mitochondrial Disorders in Oxford in order to determine how many had Education Health and Care Plans in place, and for those who did not have an EHCP why not. Methods Both authors reviewed the medical records of all children and young people aged 3 to 21 years, currently attending the NHS Highly Specialised Services for Rare Mitochondrial Disorders in Oxford to determine if an EHCP was in place. Results 46 children aged 3–21 years were included (26 male: 20 female) of whom 35 had confirmatory genetic diagnoses of mitochondrial disease, 8 had biochemical diagnoses only and 3 had suspected mitochondrial disease based on phenotype alone. 34 children and young people had EHCPs in place and 3 were in progress (pre-school aged children). The needs of 1 child were felt to be met be special educational needs support alone and an EHCP had not been applied for. 6 children in mainstream school were felt not to need an EHCP by their school, 3 of whom had visual impairment and suffered from fatigue. There was insufficient data to comment on two children. Of the 34 children with EHCPs in place, 20 attended Special Educational Needs provisions. Conclusion Although learning difficulties may not always be apparent in children with a mitochondrial disease, the cellular energy metabolism resulting in fatigue and possible multi-system disease needs to be considered when supporting a child in education. The impact on hearing, vision, growth and mental health must also be taken into account. Consideration to, and supporting, their health needs is of paramount importance and we would advocate for all children having appropriate support in place in order for them to meet their full academic potential.

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