In association with the Adult NorthStar Network, we funded and produced a collection of videos that provide an easy-access guide to the standards of care adults with Duchenne should receive from their doctors and therapists.
These bite-size videos feature leading specialists in neuromuscular care and provide an accessible resource for patients to present to their GPs and other non-neuromuscular specialist health professionals involved in their care.
The video collection follows on from the first ever Consensus Guideline for the Standard of Care of Adults with Duchenne Muscular Dystrophy which was published in the Journal of Neuromuscular Diseases in October 2021.
These ground-breaking Standards of Care were developed by the Adult NorthStar Network to help drive improvements in services and set national care standards for adults living with Duchenne muscular dystrophy. MDUK has funded and supported the Adult NorthStar Network since its establishment in 2016.
Dr. Jatin Pattni, Clinical Neuropsychologist at University College London Hospitals discusses improving and managing the psychological wellbeing and support for those with Duchenne muscular dystrophy.
Ann Morgan, Neuromuscular Care Advisor at SouthWest Neuromuscular Operational Delivery Network discusses the role of neuromuscular advisors.
Ros Quinlivan, Professor of Neuromuscular Diseases at the National Hospital for Neurology and Neurosurgery discusses the Adult North Star Network
Dr Richa Kulshrestha, Neuromuscular Consultant at Robert Jones and Agnes Hunt Hospital discusses renal and bladder complications in advanced stages of Duchenne muscular dystrophy.
Aleksandra Pietrusz, Adult North Star Co-ordinator, Specialist Neuromuscular Physiotherapist & Research Physiotherapist at London Queens Square Hospital
Dr John Bourke, Consultant Cardiologist at Newcastle upon Tyne Hospitals discusses the effect of Duchenne muscular dystrophy on the heart.
Professor Richard Keen, Consultant in Metabolic Bone Disease at Royal National Orthopaedic Hospital discusses the importance of bone health
Dr Patrick Murphy, Respiratory Consultant and Clinician Lead at Guy's and St Thomas' NHS Foundation Trust, discusses respiratory monitoring in Duchenne muscular dystrophy.
Ros Quinlivan, Professor of Neuromuscular Diseases at the National Hospital for Neurology and Neurosurgery discusses anesthesia for adults with Duchenne muscular dystrophy.
Professor Derek Willis, Adult Palliative Care Physician and Medical Director of Severn Hospice discusses symptom control, providing spaces in adult hospices, advance care planning and end of life care.
Professor Anton Emmanuel, Neuro-gastroenterology at University College London and Consultant Gastroenterologist at UCLH and the National Hospital for Neurology and Neurosurgery at Queen Square explores gastrointestinal dysfunction in those with Duchenne muscular dystrophy.