In association with the Adult NorthStar Network, MDUK has funded and produced a new collection of videos this week that provide an easy-access guide to the standards of care adults with Duchenne should receive from their doctors and therapists.
The Adult NorthStar Network is a clinical collaboration, combining a natural history database with a network of clinicians, to improve standards of care for adults living with Duchenne muscular dystrophy in the UK.
The 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.
You can watch the videos here.
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.
Professor Ros Quinlivan (pictured right), who chairs the Adult NorthStar Network, said, “We are so delighted to be sharing this collection of new videos, which will enable us to bring our Standards of Care to a wider audience.
“We developed these best-practice standards to improve the quality of care and equity of access to specialist support for adults with Duchenne across the UK.
“Owing to improvements in medical treatments and a growing number of people with Duchenne muscular dystrophy (DMD) are living to adulthood, we saw the need to put in place guidelines for health professionals who are unfamiliar with the condition to ensure that adults get the multisystem care they need.
“These 11 new videos highlight the key points from these guidelines in a fully accessible format to help inform and empower adults living with Duchenne. They can be readily shared with their support and care teams, as well as family and friends.”
The videos present vital guidance from leading specialists in the following areas:
- respiratory care
- cardiac care
- renal and bladder
- gastrointestinal care and nutrition
- general anaesthesia
- bone health
- the role of neuromuscular care advisors
- psychological wellbeing
- palliative care
- physiotherapy.
Benjamin James, pictured left, is a patient representative for the NorthStar Network. Benjamin, who is now 25 and works in health communications, was first diagnosed with Duchenne at the age of four.
Benjamin said,
As someone who lives with Duchenne, I know how important it is for standards of care for adults with Duchenne to be improved and standardised across the UK, as when we transition from paediatric care and support to adult services many experience a decline and differences in what is available.
Benjamin shared, “The NorthStar Standards of Care will help ensure adults with Duchenne have access to the best possible care so they can live their lives as fully as possible. Being able to show these videos to your busy GP or therapist in an appointment, rather than sending them a link to a long report, will make a big difference.”
The Adult NorthStar Network also published a therapist-specific guideline in May 2022 to support physiotherapists and other therapists who may have little or no experience in managing these complex care needs.
Catherine Woodhead, Chief Executive of MDUK said,
Muscular Dystrophy UK is proud to have funded and supported the development of, firstly, the best-practice standards of care for adults living with Duchenne muscular dystrophy – and now this video collection. We hope that the pioneering work of Professor Ros Quinlivan and the Adult NorthStar Network will help to improve the consistency of high-quality care for adults with Duchenne in the UK. We are hugely grateful to all of the health professionals who have contributed to this work.