Patient care & support

Duchenne UK and Decipha continue to support young people with DMD with their education and careers

Some children and young people with Duchenne muscular dystrophy (DMD) have associated learning and behavioural difficulties and need additional help at school. We have partnered with special educational needs (SEN) experts Decipha since 2017 to fund free educational support to families.

This year alone, Decipha has supported 17 families with advice, assessment and support for starting or reviewing EHC Plans.

Decipha’s RoadMap for Life programme has helped hundreds of families with their Education and Health Care Plans (EHCPs), supporting ECHP appeals, and working with special educational needs coordinators (SENCos) and teachers to ensure young people with DMD get the right support. They have also provided information and guidance at our events for parents, including our webinar series. In addition to this, the RoadMap for Life programme also offers:

 

All these services are free of charge to DMD families.

Nick Catlin and Janet Hoskin, the co-founders of Decipha, and mum and dad to Saul, who has DMD, are committed to helping every young person living with DMD live their best life. They will always look at the young person and discuss with them their ideas, dreams and aspirations, and then work with them to help identify what skills they will need to help them make progress.

One of the biggest challenges at the moment is that EHC plans are being written without specific and quantifiable outcomes and provision, which could leave families not being entitled to the support they need. However, where Decipha have helped put good plans in place and trained teachers, as well as family support, boys with DMD have been able to make good progress.

In 2018, Janet edited A Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents which includes chapters from international authors on various aspects of learning, behaviour and well-being that are associated with DMD. Nick has written a chapter in this specifically on creating successful Education Health and Care plans. Duchenne UK provide a free copy of this book to parents, teachers and SENCOs. If you’d like to order a copy, please email [email protected]

Nick and Janet have also contributed to the DMD Care UK project to improve the standards of psychological care currently implemented in UK neuromuscular clinics, and ensure that all boys and young men have access to the psychological support they need.

Find out more about the educational support that Decipha offer to young people with DMD.

Thank you to the following Family & Friends Funds for contributing towards this project: Archie’s March, Jacobi’s Wish, Moving Muscles for Marcus, Backing Jack, Standing with Jack, Hope for Gabriel

Published on 30 July 2021

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Categories Patient care & support