How important is it for people affected by SMA to have access to psychological support? Have your say by 27th April
13 April 2018
A new parliamentary inquiry investigating access to psychological support for people affected by muscle-wasting conditions is being conducted by the All Party Parliamentary Group (APPG) for Muscular Dystrophy. This is a group of MPs and Peers in the Houses of Parliament which raises awareness of all types of muscle-wasting conditions and promotes links between parliament, individuals and families affected by these conditions, charities and scientists, health professionals and decision-makers. It is chaired by Mary Glindon MP with secretarial and organisational support provided by Muscular Dystrophy UK (MDUK).
This six-month inquiry aims "To determine the availability of psychological support at specialist and community level for children and adults with muscular dystrophy and related neuromuscular conditions."
The APPG is collecting evidence from people affected by muscle wasting conditions and their relatives and from health professionals. They would like to hear about positive and negative experiences of accessing or trying to access psychological support and whether you think this is important
Please complete one of our surveys so that we can collate and pass on the results to MDUK who are compiling a report for the APPG for MD. If you are a parent of a child or young person under age 17 years with SMA, please complete a separate survey for each child:
- Survey for people with SMA
- Survey for parents / main carers of children and / or young people age 17 years and under living with SMA
- Survey for partners / parents of adults and other relatives of children / young people / adults living with SMA
- Survey for parents and relatives bereaved by SMA