Listening to lived experiences
Fay, former MDUK’s Head of Policy who is also a parent of a child living with spinal muscular atrophy, opened the conference with a talk about her personal experiences. She highlighted the ways in which her son’s incredible, dedicated, and caring team of AHPs have made a huge difference to her family.
The attendees also heard from Saul Catlin, a young adult who lives with Duchenne muscular dystrophy, and his Mum Dr Janet Hoskin, who gave a talk about their experience growing up with Duchenne during teenage years and early adulthood. As a teenager, Saul’s school worked with the students to identify outcomes for four key areas in life: independent living, which is significant as he got older; community inclusion, from making friends, participating in social activities; employment; and good health. Saul and Janet raised how it would be good if health professionals were aware and considering the importance of these areas of life as well, when they are working with teenagers living with neuromuscular conditions who are entering young adulthood.
Subject specialists and experts
We were joined by presenters with a range of fascinating expertise and experience, which included a talk on the importance of nutritional strategies for people with neuromuscular conditions, to a session on psychological support for young people transitioning from paediatric to adult neuromuscular services. These talks were well received as many people living with muscle-wasting conditions have issues with feeding and swallowing, and many teenagers may require additional support during a period where there are often changes in education, friendships, and personal relationships.
The attendees also had the opportunity to hear about examples from the holistic, community-based Duchenne muscular dystrophy hub in Sheffield that was developed by the neuromuscular team in the region, as well as the Muscle Café in Bristol which offers the chance for people living with neuromuscular conditions to meet and connect with each other.
MDUK’s reflections
MDUK’s new Health Policy Manager, Farhan, wrote about his experience:
“Although I had only joined MDUK the day before, I thoroughly enjoyed our AHP conference. It was an interesting and wide-ranging plunge into the kinds of invaluable non-specialist support that people living with a neuromuscular condition can benefit from. I was particularly glad to see that the day included lived experience and highlighted the importance of person-centred care.
I also attended the third of the afternoon breakout sessions, which included a talk about respiratory care management in pregnancy for people with neuromuscular conditions, and another talk on self-management support interventions for people with neuromuscular conditions. The talks illustrated the need for research and evidence which is tailored to our community, the potential for related improvements in clinical care, and how this can ultimately help people with neuromuscular conditions live more independent and fulfilling lives”.
Find out more about our AHP Network and how you can get involved with future clinical events and activities by emailing our Policy and Campaigns team at campaigns@musculardystrophyuk.org.