Mental health matters Healthcare campaigns

Being diagnosed with a muscle-wasting condition means adjusting to a new and unexpected reality. Muscle-wasting conditions can affect every aspect of life and many people tell us they feel isolated because of their condition. Others tell us of their anxiety or depression as they adjust to their diagnosis. The impact goes beyond those who have a muscle-wasting condition; families and carers also live with its effects.

Muscular Dystrophy UK want to see better support for people’s psychological needs from the point of diagnosis and at every stage thereafter.

In 2018 the All Party Parliamentary Group (APPG) for Muscular Dystrophy delivered a report into Access to psychological support for people with neuromuscular conditions. Based on evidence from individuals and families who shared their experiences of the emotional impact of living with muscle-wasting conditions, the APPG recommended:

  • better recognition of psychological impact of muscle wasting conditions on patients and their families
  • psychological support from the point of diagnosis onwards and at significant life milestones
  • better integration and co-ordination within specialist neuromuscular multi-disciplinary teams
  • ways of providing appropriate psychological support through greater use of face-to-face digital technology such as Skype, and within the local community

In 2021 Muscular Dystrophy UK published Shining a Light: the impact of covid 19 and the future of care for people with a muscle-wasting condition. The report set out key recommendations to improve neuromuscular care and ensure services are fit for the future across the country. It recommended that people living with a muscle-wasting condition should be able to access a psychologist or mental health specialist with expertise in working with individuals with a neuromuscular condition. 

As part of our Mental Health Matters campaign, Muscular Dystrophy UK will be pressing for change and taking forward the recommendations from the APPG for Muscular Dystrophy and the Shining a Light report, to encourage improved access to mental health services, provided by professionals with an understanding of muscle-wasting conditions.

We will be working with people living with a muscle-wasting condition and their families, as well as clinicians to:

  • upskill specialist neuromuscular healthcare professionals to provide them with the tools to better support people living with a muscle-wasting condition with their mental health
  • identify appropriate available mental health support to improve signposting and accessing help when needed 
  • ensure that any mental health support offered is appropriately tailored to individual needs

Every day counts when you’re living with a rare and often life-limiting muscle-wasting condition. You can often feel isolated and alone. At Muscular Dystrophy UK, we won’t stop until people get the support they need to help them live well with their condition.