The survival of people with DMD has significantly increased over recent years owing to improvements in standards of care. As a result, we are seeing an increasing number of adults with DMD presenting with severe, chronic, and multisystem care needs. Accessing specialist therapists when transitioning from children to adult healthcare services can also be challenging.
The Therapist Standards of Care for adults, a world first, has been developed by the Adult NorthStar Network, whose work Muscular Dystrophy UK (MDUK) has funded and coordinated.
These guidelines outline the multidisciplinary therapy care adults with DMD require, with the aim to support therapists, with little or no experience, in managing these complex care needs. They will go some way to improving function, quality of life, health, and longevity of adults living with DMD, and leads on from the adult Duchenne care guidelines published in September 2021.
Suni Narayan, neuromuscular care advisor and physiotherapist, who led the therapist working group on this work, presented the guidelines at MDUK's Neuromuscular Physiotherapy conference on 7th April 2022 ahead of its publication today (3rd May) to raise awareness of the guidelines.
Suni Narayan said:
I hope that our new Therapist care guidelines will better support therapists working with adult with Duchenne muscular dystrophy to improve the quality of care provided across the UK. In addition, I hope it empowers adults with Duchenne to direct their local therapists to such support to help upskill any therapists working with this adult community.
Catherine Woodhead, Chief Executive of Muscular Dystrophy UK, said:
I am extremely pleased that Muscular Dystrophy UK has been able to fund and support the development of the Therapists Standards of Care for adults living with Duchenne muscular dystrophy. We hope that the pioneering work of the Adult NorthStar Network will help to improve the consistency of high-quality care for adults with Duchenne in the UK, but also across the world as these recommendations are adopted in other countries.
If you have any questions about the care guidelines or the work of the Adult NorthStar network, please get in touch with our policy team at campaigns@musculardystrophyuk.org.