Dedicated specialist support for Duchenne muscular dystrophy (DMD) patients and families’ mental health and wellbeing will soon be more readily available, as part of the DMD Care UK project.
DMD Care UK is a nationwide initiative aiming to ensure that every person living with DMD in the UK has access to the best care, no matter where they live. The project brings together expert clinicians and the patient community to agree, communicate and implement DMD standards of care recommendations.
A survey of DMD families found that psychological, psychiatric and wellbeing support was desperately lacking, despite the high risks of mental health and emotional and behavioural difficulties associated with the condition.
Thanks to the £640,000 the Duchenne Research Fund has committed to tackling this challenge, as well as funding from Joining Jack, three professionals have now been appointed to help fill this gap for patients and their families; this includes a paediatric psychiatrist, adult psychiatrist and a paediatric clinical psychologist. A further adult clinical psychologist will be recruited this year.
Who has been appointed?
The following professionals have now been appointed:
Dr Rory Conn – Consultant Paediatric Liaison Psychiatrists
Dr Conn is based at the Royal Devon and Exeter Hospital in Devon and will work with DMD Care UK to establish psychiatric referral pathways, care, and treatment guidelines specifically for children with DMD. Alongside this, he will start to see patients both locally and nationally, together with neuromuscular teams, to offer advice, support and treatment options. He will also work with local teams to advise and support psychiatric care.
Dr Dot Bindman – Consultant Adult Neuropsychiatrist
Dr Bindman is based at the National Hospital for Neurology and Neurosurgery (NHNN), Queen Square in London and will be supporting adults living with DMD. She will work closely with Rory and the rest of the DMD Care UK team on the development of care guidelines for psychiatry and other psychosocial issues in DMD.
As psychiatrists, both Dr Bindman and Dr Conn will be able to screen for and diagnose mental illness and behavioural disorders, manage risk, recommend interventions and make recommendations to NorthStar sites for prescribing medications.
Dr Chloe Geagan – Paediatric Clinical psychologist
Dr Geagan will be supporting DMD patients and families, as well as training colleagues to expand expertise in DMD. As a clinical psychologist, she will be part of the multi-disciplinary neuromuscular team at Newcastle, helping them to support families and children with DMD from the point of diagnosis. Dr Geagan will play an important role in the development of psychological standards of care and referral pathways.
An additional adult clinical psychologist will be appointed in London to work alongside Chloe later in the year. Both these roles will be full time psychology posts, funded by the DMD Care UK for three years.
These posts will also work with DMD Care UK to identify research needs, so that the project can provide psychosocial care recommendations based on evidence from patients.
How will DMD patients be referred for psychiatric assessment and intervention?
One day each week of Dr Conn’s and Dr Bindman’s time will now be dedicated to DMD for the next three years.
We hope to have a national referral process in place by 1st October 2022. More information will soon be provided to clinicians on exactly how the referral process will work. The priority is for patients with the most pressing need to be seen as quickly as possible.
Visit dmdcareuk.org for more information on the DMD Care UK project.