Dr Stefan Spinty, Consultant Paediatric Neurologist (AHCH)
Dr Imelda Hughes, Consultant Paediatric Neurologist (RMCH)
Suzanne Dixon, Network Manager (RMCH)
Clare Rider, Network Co-ordinator (AHCH)
Dr Gary McCullagh, Consultant Paediatric Neurologist (RMCH)
Fran Binici, Specialist Practitioner (RMCH)
Janet Johnson, Specialist Practitioner (RMCH)
Sinead Warner, Physiotherapist (RMCH)
Lindsay Simpson, Dietitian (RMCH)
The network brings together charities, commissioners (local and specialist) healthcare professionals from adults and paediatric specialist neuromuscular services in the North West.
The vision of our network is to provide evidence-based health care for adults and children affected by Neuromuscular Conditions receiving care in the North West of England by educating and empowering healthcare and allied professionals at all levels and conducting research and audit aimed at developing/diagnosing and utilising effective treatment strategies.
The prevalence of muscular dystrophy and related neuromuscular disorders in the UK is approximately 1000 children and adults for every million of the population. In the North West which has a population of almost seven million as of 2010 therefore we would expect to have approximately 7,000 people with a neuromuscular disorder. 2009/10 data from the Muscular Dystrophy Campaign showed there were 8,141 patients with a Neuromuscular Disorder. This is the largest number in a region after London and shows that although Neuromuscular Disorders are considered rare the prevalence in the North West population is likely to have considerable impact on health care and other services. In addition to 1500 patients accessing neuromuscular services at Robert Jones and Agnes Hunt Orthopaedic NHS Foundation Trust) Oswestry.
The network has a number of key themes including:
• Education of Health Professionals
• Sharing best practice
• Ensuring equity of provision across the network
• Streamlining Access to equipment
A full copy of our current work programme can be accessed from our network Manager: Suzanne Dixon on email: Suzanne.firstname.lastname@example.org
If you have a web resource that would be useful to include to this list please contact us.