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. We want to see better support for people’s psychological needs from the point of diagnosis and at every stage thereafter.
With the support of individuals and families who’ve shared their experiences of the emotional impact of living with muscle-wasting conditions, we’ll be pressing for change and taking forward the recommendations from the APPG for Muscular Dystrophy to see:
- 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.
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.
How can you get involved in the Mental health matters campaign?
- Join our Mental health matters Steering Group, or simply find out more about it, by emailing David Stephenson on firstname.lastname@example.org
- Share Lizzie Deeble’s story – share the video on your social networks
- Tag us with your thoughts on Twitter using the hashtag #MentalHealthMatters
- Read and share the APPG report into access to psychological support for individuals with neuromuscular conditions here
- Write to your MP and ask them to take action on the recommendations in the report
Find out how you can support Changing Places Awareness Day
Family friendly guide produced for SMA standards of care
Find out what went on at this year's conference
Evan will be pushing Abi the 13.1 mile route in her wheelchair!