Update on the Northern Ireland All Party Group on Muscular

On Wednesday 20 October 2021, we joined the Northern Ireland All Party Group on Muscular Dystrophy to hear from people with a muscle-wasting condition about their experiences of accessing neuromuscular care during the pandemic. Hearing everyone's experiences was insightful and helped us understand not only how everyone had fared during the last 18 months, but also to hear how the pandemic had exacerbated already-existing barriers to care.

We were pleased to have so many of our Northern Ireland community attend and hearing all the feedback was invaluable. We heard about:

  • the success of virtual appointments and the hope that everyone can continue benefiting from a hybrid approach for appointments.
  • the struggle in accessing in-home carers during the pandemic and beyond
  • the burden of travelling to different appointments across Northern Ireland as there is no consistent provision of specialist care
  • the lack of allocated clinic space, which makes it difficult to offer face-to-face appointments, even when the need is urgent
  • the impact of minimal resources and staffing on access to critical specialist appointments, and
  • the need to provide more co-ordinated care to reduce the burden of appointments on your day-to-day activities.

We've observed similar issues across the UK, as shown in our report, 'Shining a Light: the impact of COVID-19 and the future of care for people with a muscle-wasting condition'. In this, we reported on concerns across the UK arising from delays to accessing critical appointments, the mental health impact of not seeing family and carers while shielding, loss of mobility, and increases in muscle weakness. People with a muscle-wasting condition also told us they worried the accelerated progression of their condition while shielding would mean they wouldn't regain the physical and mental health they had pre-pandemic. 

MDUK is planning to publish a Northern Ireland version of the report in early 2022. The focus will be on identifying key recommendations to improve access to neuromuscular services in Northern Ireland, while also acknowledging the differences between the Northern Ireland healthcare system and those in the rest of the UK.

Claire O' Hanlon, Chair of MDUK's Northern Ireland Council, and mother of a son with Duchenne muscular dystrophy, said:

Even before the pandemic, we had to travel to different locations to access critical appointments. We also have to travel to England to access a clinical trial. As a result, my son has missed so much school, but it is what we need to do to make sure he receives the care he needs. We need to improve neuromuscular services in Northern Ireland so that people with a muscle-wasting condition have access to appointments as and when needed; this means allocated neuromuscular clinic time, more staffing and resources, and better co-ordination of care.

If you would like to share your experiences of getting access to neuromuscular healthcare services during the pandemic, please get in touch with us at campaigns@musculardystrophyuk.org.