RESUMEN
BACKGROUND: When creating resources, such as psychoeducational materials, for children and families, it is essential to consult all stakeholders. By asking service users what they would find helpful, we can ensure that psychoeducational materials developed are directly addressing a need. This report summarises the process of co-developing a psychoeducational video with young people for the adults in their lives. METHODS AND RESULTS: The idea for a psychoeducational video originated from discussions within a Youth Advisory Group in a South London Child and Adolescent Mental Health Service. The group shared that they wanted a way of letting the adults in their lives know what is and is not helpful to hear when they are experiencing mental health distress. A workshop was held with young people to gather ideas for the content and style of a psychoeducational video resource. Through co-design methods, themes were identified including prioritising the young person's lived experience, the importance of listening, respecting and validating, adults not making assumptions about a diagnosis, and actively involving young people in care planning. A script and accompanying video were produced over several co-design sessions and shared via multiple online mass communication channels. CONCLUSIONS: This project was co-produced at all stages by young people with lived experience of mental health difficulties to develop a digital resource that they considered necessary and meaningful. Centring the voices of young people when producing materials concerning their mental health results in valuable resources and can bring autonomy to those involved.
RESUMEN
Arginine:glycine amidinotransferase (AGAT) deficiency is an ultrarare disorder of creatine metabolism, presenting with developmental delay, characteristic biochemical findings and muscle weakness. Most known cases have been identified and treated in early childhood. We describe a 27-year-old woman with learning difficulties and significant myopathy who was diagnosed through genetic investigation in adulthood. Treatment with creatine (10-15 g/day) led to a significant and rapid improvement of muscle strength. A literature review of the few reported adult cases confirms that progressive myopathy is a prominent feature that responds well to creatine supplementation. AGAT deficiency, a partially treatable condition, should be considered in the differential diagnosis of a genetic myopathy, particularly in people with developmental delay and progressive myopathy.
