Our DMD Care UK programme is working with the DMD community to develop best practice on meeting the psychosocial needs of patients and their families
It is possible to live a happy and fulfilling life with DMD. Duchenne UK is supporting that ambition by launching a new workstream to identify and tackle the biggest issues affecting the mental health and learning of people with DMD.
As well as physical needs, children and young people with DMD may experience an impact on their mental, psychological or social wellbeing – also known as psychosocial health.
While they may benefit from specific support, these difficulties are often overlooked or misunderstood, and it can be hard to get professional assessments, support and interventions.
A new DMD Care UK programme is addressing this shortfall through its psychosocial work stream, chaired by Professor Volker Straub.
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.
The project will 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 across the UK.
Alongside the development of clinical recommendations, assessments and consultations with patients have begun. A referral pathway for children with DMD has been developed with patients now being referred to it.
A landmark year of achievement and impact