The two-day event featured 12 engaging sessions, covering a wide variety of topics. Presentations highlighted best practice and new developments as well as ongoing challenges that many participants could relate to – such as addressing housing adaptations and wheelchair provisions. The key focus was how to maximise the independence and quality of life for people living with a muscle wasting and weakening condition.
Fittingly, the conference kicked off on global Rare Disease Day.
Topics on day one included wheelchair funding, best practice case studies, assistive technology, sick day rules, and research and treatment advances in Charcot-Marie-Tooth. A highlight of the day was the discussion sessions at the end, where attendees shared lessons from initiatives like joint-DMD clinics, muscle cafes and activity groups – including accessible climbing.
In the evening, dinner provided the opportunity to discuss these topics further and connect with colleagues from across the four nations. Many participants fed back how invaluable this networking is and the peer support it provides.
Day two brought further thought-provoking presentations. Our expert speakers covered psychological support, nutritional advice, young adults’ experiences of social care, and strategies to overcome language and cultural barriers. Participants also received an overview of recent advances in myopathies research, and how to support people through advance care planning.
Several key themes emerged over the two days. The first was the importance of empowering people to live meaningful, fulfilling lives: an emphasis on living and not just surviving. Another recurrent topic was the need for more equitable and accessible services. We will continue to work closely with health professionals and campaign on many of the issues raised.
Reflecting on the conference, Sue Manning, Neuromuscular Care Advisor at Leeds Teaching Hospitals NHS Trust, said:
“It was a great conference. The quality of speakers was excellent, the content was up to date and relevant and it was a great opportunity to network with colleagues. MDUK – thank you!”
Rachel Salmon, a neuromuscular clinical nurse specialist, from Cardiff and Vale UHB, said:
“A superb conference! Innovative speakers, very relevant to our clinical practice to enhance learning and influence good practice to improve patient experience. Good opportunities for networking to share practice and new ideas to take forward...Thank you!”
We’re very grateful to all 15 speakers for their time and expertise. Thanks to all who helped shape and deliver this year’s conference and of course to our attendees.
Find out more about our future upskilling events here: Events and Conferences for Health Professionals - | Muscular Dystrophy UK
To hear more about the conference and our work with health professionals, please get in touch: campaigns@musculardystrophyuk.org