Access to mental health support has been an increasingly prominent issue in recent years. However, an inquiry by the All Party Parliamentary Group for Muscular Dystrophy has found that people with muscle-wasting conditions are falling through the gap in receiving that support.
We heard many powerful and emotional stories from such people and their families. Through insufficient support, they are being left to deal with their diagnoses alone or having to pay privately for therapy, which many cannot afford.
Together with Muscular Dystrophy UK, we are urging immediate action to ensure support from diagnosis onwards and at significant milestones, as well as better integration and co-ordination within specialist teams. We also recommend finding innovative ways to provide appropriate psychological support through digital technology such as Skype, and local community initiatives.
Every day counts when you’re living with a rare and often life-limiting muscle-wasting condition. We must ensure everyone who needs psychological support can access it.
Mary Glindon MP (North Tyneside)
Chair, APPG Muscular Dystrophy
House of Commons
London SW1A 0AA
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Notes to editors
About muscle-wasting conditions
- More than 70,000 children and adults in the UK have a muscle-wasting condition.
- Muscle-wasting conditions may be inherited or strike out of the blue. These conditions cause muscles to weaken and waste over time, leading to increasingly severe disability. Some affect the heart and muscles vital for breathing, cutting lives short.
Muscular Dystrophy UK
- Muscular Dystrophy UK is the charity for 70,000 children and adults living with muscle-wasting conditions. We provide vital information, advice and support to help people live as independently as possible. We accelerate progress in research and drive the campaign for access to emerging treatments.