Patient care & support

Duchenne Research Fund partners with Duchenne UK to transform DMD psychosocial care

Duchenne UK is delighted to announce a new partnership with the Duchenne Research Fund to work together on our DMD Care UK project.

The Duchenne Research Fund is awarding a £640,000 grant to fund vital psychosocial care and research as part of the nationwide DMD Care UK programme.

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 muscular dystrophy (DMD), and their families.

This project, called the DMD Care UK Psychosocial Programme, has the ambitious aim of working towards a ‘new normal’: namely that the appropriate psychosocial evaluation, care and treatment be fully integrated throughout every DMD 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 DMD across the UK.

This Psychosocial Programme is a crucial component of the wider DMD Care UK programme that was launched in October 2020 by Duchenne UK and Newcastle University to improve standards of care in all aspects of DMD across the UK. The project works with the North Star Network through expert working groups to ensure reach and engagement across the whole of the UK.

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 experts and representatives from across the DMD 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 DMD in a sustainable way across the UK.

Dr Sarah Shelley, medical trustee at the Duchenne Research Fund, said: “The Duchenne Research Fund is thrilled to make this significant grant to improve psychosocial care for Duchenne patients and their families. This is a vitally important but under-resourced and under-researched area. We are delighted to be working with Duchenne UK and hope that the clinicians together with the DMD Care UK working group can make crucial progress towards improving standards of care for all. Our charity is committed to funding research to improve the lives of everyone living with Duchenne and we look forward to following the progress of this project.”

Alex Johnson, co-founder of Duchenne UK, set up DMD Care UK in 2020 with Newcastle University. She said: “We are so delighted to be partnering with DRF on this project. It really is responding to a huge need that families told us they had – to get proper psychological help for their children and themselves. We are so grateful to DRF for their support: not only are they funding it, but they bring with them knowledge and expertise that can really help to drive this project forward and address an urgent unmet need for families.”

Cathy Turner, at the John Walton Muscular Dystrophy Research Centre, Newcastle University is the project manager for this initiative and said: “This award is so important to the psychosocial care element of the overall programme. It will not only allow us to conduct research into needs and effective support, but also to recruit clinical psychologists who can become expert in the management of Duchenne muscular dystrophy. This is vital for the sustainability of improvements in this area of care across the UK.”

Duchenne UK and the DRF will work closely together to ensure that the outputs of the project will be widely shared and incorporated into improving the care of each and every child and their families in the UK.

Visit the DMD Care UK website to learn more about the project.

Published on 21 October 2021

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