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Muscular Dystrophy UK, Spinal Muscular Atrophy UK (SMA UK), and Pathfinders Neuromuscular Alliance are jointly raising concerns about potential disruptions in care for individuals in Northern Ireland with muscle wasting conditions, due to impending changes at the Belfast Health and Social Care Trust’s adult neuromuscular service.

The departure of the current lead consultant at the end of March is causing significant anxiety among patients as there has been no communication regarding ongoing care arrangements. Of particular concern is the potential interruption in access to vital treatments such as risdiplam, crucial for adults with Spinal Muscular Atrophy (SMA), as the Trust is the sole provider of this medication in Northern Ireland.

The situation has sparked worries about the availability of other essential treatments like Spinraza for SMA and Translarna for Duchenne muscular dystrophy. These treatments are crucial for halting the progression of these conditions and preventing the loss of muscle function, which could have severe implications for patients’ quality of life and even their survival. Michaela Hollywood, a spokesperson for Pathfinders Neuromuscular Alliance, who relies on risdiplam herself, highlights the potentially dire consequences of any interruption in access to these life-changing medications.

Despite our joint efforts to seek clarification from the Trust, a clear plan for the future of the adult neuromuscular service has yet to be communicated, further exacerbating concerns among patients and their families.

Read the full press release from Muscular Dystrophy UK, Spinal Muscular Atrophy UK, and Pathfinders Neuromuscular Alliance here.