We have joined forces with Muscular Dystrophy UK and Spinal Muscular Atrophy UK (SMA UK) to raise concerns of people living with muscle wasting and weakening conditions as a result of potential significant changes at the Belfast Health and Social Care Trust adult neuromuscular service in the coming weeks.
Patients have been informed that the current lead consultant will be leaving at the end of March and there has been no communication about any arrangements in place for the continuation of care beyond this date.
The news raises major concerns about the access and availability of treatments including risdiplam, a treatment currently available to eligible adults living with Spinal Muscular Atrophy (SMA) through a Managed Access Agreement (MAA) for the Northern Ireland community.
The Trust is the sole provider of this treatment in Northern Ireland, and with the departure of the lead consultant, no prescriptions will be able to be signed for. Those patients currently taking the medication are on a ‘ticking time bomb’ with only weeks left of access to a life-changing drug.
The organisations are also concerned about the potential implications for access to other treatments, including Spinraza, a second SMA treatment, and the Duchenne muscular dystrophy treatment Translarna.
For patients with SMA or Duchenne muscular dystrophy, treatments aim to halt progression of the condition so that it does not get worse. A worsening of the condition could mean a loss of the use of muscles for swallowing or breathing, which represents a significant risk to the patients’ lives and their quality of life.
Director of Campaign, Care and Support, Rob Burley, at Muscular Dystrophy UK said: “We’ve heard from a number of people and their families who are understandably extremely worried about the current situation, and we share their concerns. We’ll do all we can do help resolve this and can’t express enough the urgency to get some answers and clear information from the trust.”
Giles Lomax, CEO of SMA UK added: “It’s really important that everyone across the UK has equal access to treatment and we will advocate as strongly and as quickly as possible to ensure that there is a clear and immediate plan in place to continue with the Risdiplam service within the Belfast trust.”
Along with Muscular Dystrophy UK and Spinal Muscular Atrophy UK (SMA UK) we have written to the Belfast Health and Social Care Trust expressing their concerns and as yet have not received a clear response on the future of the adult neuromuscular service.
if you are concerned about access to treatments in Northern Ireland please email us on info@pathfindersalliance.org.uk