DMD Care UK Psychosocial Programme

Why are we supporting this project?

Psychosocial care is an absolute priority within the DMD Care UK programme: it is an area with a current chronic lack of provision across the NHS, and in particular there is also a lack of consensus within Duchenne on how and when to best monitor and support mental health and neurobiological impacts of the disease.

There are not enough specialists with the training and knowledge required to support the psychosocial needs of Duchenne patients and their families. Anecdotal evidence and patient surveys indicate that some families have no choice but to seek private psychologist consultations in times of acute need. This is not a viable solution for the community as a whole, and such clinicians are also unlikely to have specialist knowledge of the needs of Duchenne.

Improvements are needed in basic access to care, evaluation, therapies, prescribing and referral pathways, evidence and recommendations for best approaches and access to experts with the specialist knowledge needed to deliver the best care.

What are the project’s aims and objectives?

The grant will fund the posts of two research clinical psychologists, a neuropsychiatrist and additional support staff over the next three years at Newcastle University and the National Hospital for Neurology and Neurosurgery in Queens Square, London, with an aim to dramatically increase psychosocial standards of care for children and young adults with Duchenne, and their families.

The psychologist posts will increase the specialist psychosocial expertise and capacity that is currently lacking and enable the undertaking of priority research questions. The aim of the neuropsychiatrist will be to establish current prescribing practice for relevant medications, gather evidence and, as necessary, conduct research to support a consistent and best-practice referral and/or prescribing pathway at all North Star centres including UK recommendations for clinicians.

What impact will this have for the community?

This project has enormous potential to impact on quality of life and health for people with Duchenne, for example through: better family support; more proactive intervention at predictable points of need such as loss of ambulation, adolescence and puberty, transition to adulthood, and clinical trial participation and cessation; better treatment of associated neurobiological aspects of Duchenne such as ADHD, autism spectrum disorders and anxiety; decreased levels of untreated depression, anxiety and suicidal feelings through timely psychiatric intervention and improved access to medication where appropriate; and better models of transition from paediatric to adult care and from childhood to adulthood.

How will this link to the wider DMD Care UK programme?

The work of the clinicians and the research questions they address will be guided by the psychosocial Working Group that has been convened through DMD Care UK, bringing together leading Duchenne muscular dystrophy experts and representatives from across the Duchenne community. Together they will work to ensure that the evidence and recommendations generated in the course of the grant are channelled towards the broader aim of improving psychosocial standards of care for Duchenne in a sustainable way across the UK. The DRF is proud to already be a funder of the overarching DMD Care UK programme.

DMD Care UK

Watch below to learn more about DMD Care UK, which was launched in October 2020 by Duchenne UK and Newcastle University.