Sheli Rodney

The Duchenne Research Fund was pleased to participate in Duchenne UK’s latest parent information day, held in March in central London. Dozens of families attended from all over the UK, and one even made the trip from Boston to hear about the latest research and progress happening across the Duchenne arena – in particular the DMD Care UK project, which aims to improve standards of care for all Duchenne families in the UK.

DRF’s director of operations, Sheli Rodney, spoke about the DMD Care UK Psychosocial Programme, to which we have awarded £640,000 of funding. The project has enabled the hiring of Dr Chloe Geagan, paediatric clinical psychologist at Newcastle University; Dr Linda Bouquillon, clinical psychologist at the National Hospital for Neurology and Neurosurgery in Queens Square; as well as appointing Dr Dorothea Bindman, consultant neuropsychiatrist at Queens Square, one day a week to support the project. Joining Jack has also collaborated on this project, funding the appointment of Dr Rory Conn, consultant paediatric and adolescent psychiatrist at Royal Devon and Exeter NHS Trust, one day a week to support the project. DRF’s grant also funds administrative staff to support the clinicians employed as part of the project.

Sheli was pleased to introduce Dr Geagan and Dr Conn (pictured) who presented the initial stages of their work with patients and clinicians, and their plans for the scaling up of the psychosocial programme.

The project has the ambitious aim of working towards a ‘new normal’: namely that the appropriate psychosocial evaluation, care and treatment be fully integrated throughout every Duchenne patient’s life, across the UK. It will address the current lack of understanding of, provision for and consensus around psychosocial care and needs, in order to generate clear evidence and expert-opinion-based recommendations for psychosocial care in Duchenne across the UK.

The wider DMD Care UK programme was launched in October 2020 by Duchenne UK and Newcastle University to improve standards of care in all aspects of Duchenne muscular dystrophy across the UK.

Click here to read more about the project.

Click here to read about the DMD Care UK initiative.