DMD Care UK Psychosocial Programme

Access to best care for everyone with Duchenne
The Duchenne Research Fund is awarding a £640,000 grant over three years to fund vital psychosocial care and research as part of the nationwide DMD Care UK programme.

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 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.

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 Duchenne muscular dystrophy 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.

Standards of care

£640,000

2021-24

London and Newcastle

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.

DRF medical trustee Dr Sarah Shelley: “The DRF 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.”

DMD Care UK

DMD Care UK was launched in 2020 by Duchenne UK and Newcastle University. Click here to learn more about it.

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