There is an increased risk of mental health, emotional and behavioural needs in DMD. Despite this, our family survey found that psychosocial care was one of the most significantly lacking areas of DMD care.
Thanks to funding from the Duchenne Research Fund and Joining Jack, we are working to change this. Two clinical psychologists and two psychiatrists have been funded to conduct research and help to agree a UK-wide standard of psychosocial care, as well as directly support some DMD patients.
DMD Care UK has funded four posts to improve psychosocial care in DMD:
These posts will carry out research to help establish national guidelines for psychosocial care in DMD. They will also offer some direct support to patients.
The psychiatrists will be working one day a week and will see patients face-to-face and online. Psychiatrists are medical doctors who can diagnose mental health problems and prescribe medication.
The clinical psychologists will see patients at their local centres, and will also offer guidance on treating psychological problems in DMD to healthcare professionals at other centres. Clinical psychologists will work with patients and their families to identify and work through their difficulties. They provide therapeutic support, but cannot prescribe medication.
You will need a referral from your neuromuscular consultant or another specialist to make an appointment with a psychiatrist or psychologist.
The psychiatrists will be able to take referrals from across the UK for online appointments, whereas the clinical psychologists will see patients locally.
Note that some assessments and diagnoses - such as for autism spectrum disorder (ASD) - cannot be made online. Psychiatrists may make a referral to your local centre for these assessments.
We recognise that these posts will not be able to meet the full level of demand. However, DMD Care UK will assess the level of unmet need to provide evidence to local services of the importance of psychosocial care. We will also develop guidance, so that professionals across the UK can better support DMD patients' mental health and wellbeing.
You can download the family guide to the project here.