DMD Care UK’s new guide to help you get the best standards of physiotherapy and occupational therapy care at every stage of DMD
Physiotherapy and occupational therapy are very important in helping people with Duchenne muscular dystrophy (DMD) move and live well for as long as they can.
That’s why DMD Care UK’s therapy working group has launched two new guidance documents – one for healthcare teams and one for people with DMD and their families which give information about the best standards of physiotherapy and occupational therapy care needed at different stages of the disease.
DMD Care UK – ensuring the best standards of care
DMD Care UK is a collaborative initiative between the John Walton Muscular Dystrophy Research Centre at Newcastle University and Duchenne UK, embedded in the UK North Star Network. It is funded by Duchenne UK, Duchenne Research Fund and Joining Jack.
These new documents join a suite of guidance that DMD Care UK has already published for clinicians and for people with DMD and their families. These include guides on respiratory and cardiac care, bone health, and puberty and testosterone treatment.
Guidelines for clinicians can be found here.
Those for patients and families here.
Physiotherapy and occupational therapy for people with DMD
Physiotherapy helps keep muscles strong and flexible, so people with DMD can move and do as much as possible. Occupational therapy aims to make everyday tasks possible by making adjustments to fit what people are able to do, and by offering helpful equipment when needed.
These two therapies work together to create personalised goals, making sure the care fits around people’s needs and way of life. This team approach can help people with DMD stay active and independent in their daily lives for longer.
Why the guidance is needed
The guidance is needed so that people with DMD and their families know what to expect in clinic and at home visits. It also offers recommendations that can be followed by both specialist and community physiotherapy and occupational therapy teams making sure they are able to follow the most up to date and consistent guidance available. This helps DMD Care UK towards its goal of ‘Best Care for All’.
The guidance is also designed based on what people with DMD and their families told the therapy working group was important to them, such as clear communication between community and specialist teams, consistency in seeing the same therapists, and a strong support team when transitioning to adult care.
“As the mother of a son who has DMD and about to become an adult, I have seen how important good physiotherapy and occupational therapy has been to him, and how it has changed over time. This guidance has been designed to help other people in our position get the best possible physiotherapy and occupational therapy whatever their age and stage of DMD. We would like to dedicate these therapy guidelines to Shiv Thakrar [February 2011 – March 2023] and acknowledge the support and input Sejal Thakrar has given to DMD Care UK and the Therapy Working Group in particular.”
Alex Johnson OBE, Co-founder of Duchenne UK and Chief Executive of Joining Jack
How the guidance was developed
The guide was developed by Dr Anna Mayhew, Consultant Physiotherapist at the John Walton Muscular Dystrophy Research Centre, Newcastle University, and DMD Care UK’s physiotherapy and occupational therapy working group. It was reviewed by the Patient Advisory Board of DMD Care UK.
It has been reviewed and endorsed by the Clinical Committee of the NorthStar Clinical Network and The Association of Paediatric Chartered Physiotherapists (APCP).
The guide, and other DMD Care UK guides, can be downloaded from the DMD Care UK website: dmdcareuk.org