To support specialists involved in neuromuscular care, the Adult North Star Network published a Consensus Guideline for the Standard of Care of Adults with Duchenne Muscular Dystrophy in October 2021. It provides guidance for health professionals to ensure adults with Duchenne muscular dystrophy get equitable best-practice care, and leads on from the child-focussed standards of care for children with Duchenne first published in 2010 and revised in 2018. This was followed by a Therapist-specific guideline in May 2022 to support therapists, with little or no experience, in managing these complex care needs.
These documents are lengthy, technical guides for clinicians and can be a bit daunting to read from a lay perspective. As such, Muscular Dystrophy UK (MDUK) have put together short videos on each specialist area of care to provide adults with DMD. Below you will see a range of videos identifying the key points an adult with DMD should be aware of.
Professor Ros Quinlivan, Neuromuscular Consultant at the National Hospital for Neurology and Neurosurgery discusses the Adult North Star Network.
Dr Patrick Murphy, Respiratory Consultant and Clinician Lead at Guy's and St Thomas' NHS Foundation Trust, discusses the importance of respiratory monitoring in Duchenne muscular dystrophy.
Dr John Bourke, Consultant Cardiologist at Newcastle upon Tyne Hospitals discusses the effect of Duchenne muscular dystrophy on the heart.
Dr Richa Kulshrestha, Neuromuscular Consultant at Robert Jones and Agnes Hunt Hospital discusses renal and bladder complications in advanced stages of Duchenne muscular dystrophy.
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 gastrointerstinal dysfunction in those with Duchenne muscular dystrophy.
Professor Richard Keen, Consultant in Metabolic Bone Disease at Royal National Orthopaedic Hospital discusses the importance of bone health.
Professor Ros Quinlivan, Neuromuscular Consultant at the National Hospital for Neurology and Neurosurgery, discusses the different types of anaesthesia that may be used in a procedure and the importance of discussing which is most suitable with your specialist consultant.
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.
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.
Aleksandra Pietrusz, Adult North Star Co-ordinator, Specialist Neuromuscular Physiotherapist & Research Physiotherapist at London Queens Square Hospital, provides an overview of the Therapist Consensus Guidelines and the role of therapists to support adults with DMD.