To conduct a multi-centre audit on patient care in a cohort of DM1 patients attending tertiary neuromuscular centres in the UK, based on 2018 consensus-based care recommendations. 

To assess the impact of an implementation of a change in practice to improve the access to care.

Myotonic Dystrophy Type 1 (DM1) is the most common muscular dystrophy in adults. Structured multi-disciplinary care is essential for managing the multi-system involvement in DM1 to improve patient safety and to reduce mortality and morbidity. Access to care can be variable dependent on geographical area and proximity to specialised services and time available to the neurologist.

Total of 375 patients (197 (53%) female, mean age 47 years (range 1-84)) with DM1 were analysed. 62% had adult-onset disease. Neurology teams reviewed 64% of patients at least once a year. Cardiology review was performed annually for  30% of DM1 patients; of patients with respiratory needs, only 12% were reviewed as per recommendations; Swallowing function was assessed in only 44% of those required; assessment of cognitive-impairment was conducted only in 12%.

Next we implemented an allied health care professional (AHP) led DM1-clinic in one centre and we analysed the data from 35 DM1 patients over three months: Total of 35 patients were reviewed. Cardiology review rates increased to 68%(22/35) where 100% of DM1 patients had respiratory and swallowing assessments.

This multi-centre UK audit identifies several significant areas of care that need optimising in DM1, even within dedicated neuromuscular clinics. This highlights an opportunity for a national initiative to establish minimum care standards. However innovative utilisation of available resources can at least improve some aspects of, timely access to care.