Launch of the Duchenne Care UK psychosocial guidelines
We are proud to announce the launch of three new Duchenne Care UK psychosocial clinical guidelines. Developed with our working groups and led by Dr Chloe Geagan and Dr Rory Conn, and Dr Janet Hoskin, these guidelines strengthen UK wide standards for psychosocial support for people with Duchenne muscular dystrophy (DMD) and their families.
The new guidelines are designed to help those caring for and supporting patients with DMD, to better understand and manage the mental, emotional, social, and spiritual effects of the disease. The three volumes are each aimed at a specific group of clinicians or practitioners to ensure these psychosocial needs are being addressed in clinic and within education settings.
Volume 1: Psychosocial standards of care for neuromuscular teams
This provides practical, clinically focused psychosocial guidance for neuromuscular specialists supporting children, young people and adults with DMD. It outlines what every neuromuscular team should know and be striving for, to embed psychosocial care into routine clinical practice.
This includes: Diagnosis and communication / Psychologically informed care at every appointment / Reasonable adjustments and accessibility / Identifying and responding to neurodevelopmental and mental health needs / Cognitive testing and onward referral routes / Medication guidance
Wider support needs, including transition to adulthood, carer wellbeing, and support for siblings and female carriers.
Volume 2: Psychosocial standards of care for mental health professionals
Volume 2 provides practical, DMD‑specific guidance for psychologists, psychiatrists, and other mental health professionals working with children, young people and adults with DMD. It explains what mental health practitioners need to understand about DMD, how to adapt assessments and therapy, and how to collaborate effectively with neuromuscular teams.
This includes: Understanding DMD’s neurobehavioural profile / Gaps in current provision / The need for developmentally sensitive, cognitively informed mental health assessment / Common psychosocial and mental health presentations such as depression and anxiety, and psychosocial screening and risk / Therapeutic approaches and adaptation / Medication considerations / Wider psychosocial needs
Volume 3: Psychosocial standards of care for education professionals
This provides practical guidance for teachers, teaching assistants, special educational needs coordinators (SENCOs), education leaders and university staff supporting children and young people with DMD. It emphasises that high aspirations are essential, and that young people with DMD can thrive academically and socially when provided with the right support, autonomy, and inclusive education environments. It explains the educational, cognitive, social and physical needs linked with DMD, and how to create inclusive, aspirational learning environments.
This includes: Understanding DMD in education / The four key SEND domains (communication and interaction / cognition and learning / social, emotional and mental health / physical and sensory needs) / Assessment and classroom support / Supporting mental health and social inclusion / Physical access, safety and physical education / Working with families / Education, Health and Care Plans (EHCP) / Transitions to secondary school, further education and university
This guide was written by Dr Janet Hoskin, Associate Professor of Education at the University of East London, with the support and input of the Duchenne Care UK working group for education.
“These guidelines give essential information for schools and colleges about the Special Educational Needs of young people with DMD. As well as progressive physical needs, young people with DMD are at risk of co-occurring learning, communication and mental health difficulties, that can go unrecognised in schools and colleges. Supporting these needs effectively allows young people with DMD to thrive in education and have exciting ambitions for the future.”
Dr Janet Hoskin
Why these guidelines matter
Many people with DMD experience a range of psychosocial needs — including neurodevelopmental conditions, learning difficulties, anxieties and challenges associated with physical change.
Historically, the focus of DMD care has been on physical aspects, but these guidelines emphasise the importance of brain involvement too and the need for appropriate, timely care. Access to specialist psychological support is inconsistent across the UK and the new guidelines offer recommendations that all care teams should be working towards. They include: (1) Practical tools for clinicians, families and educators (2) Ways to help strengthen integration between neuromuscular, psychological and educational services (3) Help to make the case for funded psychosocial roles within the NHS, based on identified unmet needs
Accessing the guidelines
The guidelines can be downloaded here:
Volume 1: Psychosocial standards of care for neuromuscular teams
Volume 2: Psychosocial standards of Care for mental health professionals
Volume 3: Psychosocial standards of care for education professionals
Psychosocial Appendices for Volume 1 and 2
Guidance for people with DMD and their families
As well as these three volumes for neuromuscular teams, mental health professionals and those working in education, Duchenne Care UK is working on a fourth volume for people with DMD and their families.
With significant additional funding from the Duchenne Research Fund, the psychosocial programme is part of a wider, multi‑year national effort by Duchenne Care UK to create and implement evidence‑based clinical recommendations across all areas of DMD care, including cardiac, respiratory, physiotherapy, corticosteroids and.
Duchenne Care UK is a collaborative initiative between the John Walton Muscular Dystrophy Research Centre at Newcastle University and Duchenne UK, embedded in the UK North Star Network. It is funded by Duchenne UK, Duchenne Research Fund and Joining Jack.