Our programme to improve DMD psychosocial care

It is possible to live a happy and fulfilling life with Duchenne muscular dystrophy (DMD) and more children and young people than ever are planning positive futures as they grow into adulthood.

Develop guidelines on best practice and assessments for psychosocial care

As well as physical needs there are established learning and psychological (or psychosocial) risks that children and young people with DMD experience that might benefit from specific support. These difficulties are often overlooked or misunderstood, and it can be hard to get professional assessments, support and interventions.

The DMD Care UK programme is addressing this specifically, through its psychosocial work stream, chaired by Professor Volker Straub. This has been set up to work with patients and families, neuromuscular and psychosocial clinicians to identify and tackle some of the biggest issues faced by our community in this area.

The Duchenne Research Fund and Joining Jack have funded the key team members for three years to carry out research and develop guidelines on best practice and assessments for psychosocial care in the UK.

Understand the need for psychosocial care

The project will also keep track of the unmet need from the DMD community – looking at how many referrals and what types are requested.

This information will be used to show the level of need to the NHS and make a better case to fund these kinds of posts in different centres around the UK.

You can find out more about the programme and how it might help you here.

Published on 27 July 2023

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