In 2014 we launched our neuromuscular Support Hub. The website, which is the first of its kind, provides information and resources for people living with muscle-wasting conditions and their families, as well as health professionals and NHS commissioners.
Sulaiman Khan has congenital muscular dystrophy and is from Woodford Green regularly uses the hub website, and believes it is an essential resource for anyone with a muscle-wasting condition. Sulaiman said:
“The neuromuscular Support Hub brings together information for people with muscle-wasting conditions, health professionals and NHS commissioners. It is a great one stop shop for anyone to find information about muscular dystrophy and neuromuscular conditions. For me personally it has been a great resource that allows me to quickly and easily find information where previously I was unable to find any of these resources all in one place.”
Sulaiman has created a hands-on video of himself using the hub to show the ways in which the website helps to support people with muscle-wasting conditions, health professionals and NHS commissioners in the UK.
To view the video and hear Sulaiman’s thoughts on the Support Hub please follow the link below to a video on his Youtube channel – https://www.youtube.com/watch?v=1p7Qd5-hnRM&feature=youtu.be.
The Hub’s ‘near you’ section is a popular part of the website and includes information on local services and resources.
Categories that can be searched within include:
- details of the specialist neuromuscular teams in the UK
- details of practical support available including listings of wheelchair, equipment and carer services
- listings of local support groups and their next meeting dates
- information on where to find a nearest hydrotherapy pool or disability sports club and how to access them
Our sections dedicated to health professionals and NHS commissioners contain information about:
- training events on neuromuscular conditions for physiotherapists
- information on our GP e-learning module on muscle-wasting conditions
- publications for health and social care professionals
- NHS England neuromuscular service specifications
- a working group for physiotherapists
- documents for commissioners on the prevalence of neuromuscular conditions
To find out more about the Support Hub or the Bridging the Gap project please get in touch with Lloyd Tingley at email@example.com or on 020 7803 4804.