In recent years, The Pixel Fund has generously supported the work of Muscular Dystrophy UK. Most recently they granted £10,000 in total towards a four year research project, which advanced a promising potential genetic therapy for the childhood muscle-wasting condition: spinal muscular atrophy. We are delighted and extremely grateful to receive the support of The Pixel Fund once again, this time towards a strategic intervention to substantially increase access to mental health support for children and young people living with muscle-wasting conditions.
Muscular dystrophy and muscle-wasting conditions are often highly disabling and can have a huge mental health impact. For children and young people living with one of these conditions there can be particular challenges, as while their contemporaries are becoming more independent, they are likely to become more dependent on care. For example, boys living with Duchenne muscular dystrophy (one of the most common and severe conditions) typically lose the ability to walk by about the age of 12. Increasing capacity for paediatric neuromuscular psychological support is therefore a priority for Muscular Dystrophy UK.
Across the UK there is a network of 60 neuromuscular care advisors (NCA) working in the NHS. These professionals help people living with muscle-wasting conditions to design and manage their (often very complex) healthcare plans, providing referrals to a broad range of services such as physiotherapy, respiratory specialists, and heart specialists.
They also provide support to the patients in their meetings with them, but if the patient is particularly distressed and in need of mental health support, they will refer them to a mental health specialist such as a counsellor or a psychologist. There is very limited availability of this kind of support - only 8 of the 24 UK muscle centres have access to a specialist psychologist
In order to increase capacity for paediatric neuromuscular psychological support, we will train the NCA network in psychological support skills (level 2) so that they can support some of the patients directly, meaning that they will need to make fewer referrals to specialist psychologists as this will be reserved for people with more severe mental health needs.
The Pixel Fund is generously supporting this training with a £6,000 grant, which will pay for the training for the 24 NCAs who specifically work with children and young people. This has the potential to really make a big difference for children living with muscular dystrophy, so we are extremely grateful for the Trustees’ continued support for our work.
On behalf of Muscular Dystrophy UK