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Neuromuscular Clinical Networks manged by Muscular Dystrophy UK

We manage and support the coordination of five regional neuromuscular clinical networks across the UK: 

  • East Midlands 
  • Midlands 
  • London and South East Coast 
  • Thames Valley and Wessex 
  • Yorkshire, the Humber, and the North East 

These networks play a key role in ensuring that people living with muscle wasting and weakening conditions receive the best possible care and support, no matter where they live in the UK. 

Read our 2021 report on Managed Clinical Neuromuscular Networks for powerful case studies on what the networks have achieved in improving neuromuscular care. 

East Midlands

The East Midlands Neuromuscular Network seeks to improve access to neuromuscular care across the region. 

The network is chaired by Dr Saam Sedehizadeh, Consultant Neurologist at the Nottingham University Hospitals NHS Trust. The Steering Group has representatives from Nottingham University Hospitals NHS Trust; Royal Derby Hospital; Derbyshire Community Health Services; Leicester Royal Infirmary; Glenfield Hospital and United Lincolnshire Hospitals NHS Trust. 

The network meets several times a year to discuss current developments in the area, including: 

  • Supporting the coordination of neuromuscular care across primary, secondary, and tertiary services in the East Midlands region 
  • Identify and share good practice and good standards of care 
  • Ensure neuromuscular disorders and associated needs are understood by commissioners and local teams resulting in more effective care 
  • Work to secure the provisions of care equipment for people with neuromuscular conditions 

Past events and activities 

  • Work in securing access to mechanical insufflation-exsufflation (MI-E) Cough Assist machines for neuromuscular patients in Lincolnshire 
  • Survey on the impact of COVID-19 pandemic on people living muscle wasting and weakening conditions in the East Midlands 
  • Upskilling event on neuro-respiratory failures and the role of cough assist machines and non-invasive ventilation for health professionals 
  • Developing an East Midlands Cough Assist Policy
London and South East Coast

The London and Southeast Coast Neuromuscular Network aims to enhance access to neuromuscular care throughout the region. 

The network is chaired by Professor Ros Quinlivan from the Queen Square Institute of Neurology. The Steering Group has representatives from Queen Square Institute of Neurology; King’s College Hospital; Great Ormond Street; Evelina Children’s Hospital; Guy’s and St Thomas’ NHS Foundation Trust; St George’s Hospital; The Royal London Hospital; Royal Free Hospital and Royal Brompton Hospital. 

The network meets several times a year to discuss current developments in the area, including: 

  • Supporting the coordination of neuromuscular care across primary, secondary, and tertiary services 
  • Ensuring that commissioners and local teams understand neuromuscular disorders and associated needs to improve the effectiveness of care services 
  • Promoting awareness of service provision across London and Southeast, with a focus on hospital services, patient flows, outreach clinics, and local and independent support services 

Past events and activities 

  • Study days for neuromuscular clinicians in the LSEC region 
  • National upskilling events for neuromuscular allied health professionals, acute and emergency medicine professionals, and General Practitioners (GPs) 
  • Family information days and support events across the LSEC region 
  • Working on securing investment in NHS-funded neuromuscular roles across the region 
Thames Valley and Wessex

The Thames Valley and Wessex Forum (TVW) is dedicated to enhancing access to neuromuscular care across the region. 

The network is co-chaired by Dr Stefen Brady and Sithara Ramdas from the Oxford Muscle Service. The Steering Group has representatives from Oxford University Hospitals Trust; University Hospital Southampton NHS Foundation Trust; University Hospitals Dorset NHS Foundation Trust and Hampshire Hospitals NHS Foundation Trust. 

The network meets several times a year to discuss current developments in the area, including: 

  • Supporting the coordination of neuromuscular care across primary, secondary, and tertiary services 
  • Ensuring that commissioners and local teams understand neuromuscular conditions and associated needs to improve the effectiveness of care services 
  • Working in identifying gaps in neuromuscular services in the region and knowledge sharing and exchange between services 
  • Promoting awareness of neuromuscular conditions in the TVW region 

Past events and activities 

  • Clinical study days for neuromuscular clinicians 
  • Meeting with NHS England representatives to discuss provisions of services in the region 
  • Conducting an information day for people with neuromuscular conditions and their families 
  • Support events for young people with neuromuscular conditions, with a focus on transition 
West Midlands

The West Midlands Neuromuscular Network seeks to improve access to neuromuscular care across the region. 

The network is chaired by Professor Tracey Willis, Consultant Paediatric Neurologist with a Specialty Interest in Neuromuscular Disorders and Bryan Gould. 

The Steering Group has representatives from The Robert Jones and Agnes Hunt Orthopaedic Hospital and Birmingham Children’s Hospital; Birmingham Heartlands Hospital and Birmingham Children’s Hospital; West Midlands Rehab Centre; Queen Elizabeth Hospital Birmingham; University Hospital North Staffordshire; Heart of England Hospital; University Hospitals Coventry and Warwickshire and Muscular Dystrophy Support Centre.  

The network meets three times a year to discuss current developments in the area, including:  

  • Support the coordination of neuromuscular care across primary, secondary, and tertiary services 
  • Promote awareness of service provision across the West Midlands, looking at hospital services, patient flows, outreach clinics and local and independent support services 
  • Identify and share good practice, promoting emergency care plans and care guides 
  • Ensure neuromuscular disorders and associated needs are understood by commissioners and local teams resulting in more effective care 

Network achievements to date  

  • Secured cough assist commissioning policies for CCGs across much of the region 
  • Played a role in securing investment in 9 new NHS funded neuromuscular MDT roles across the region since 2013  
  • Network ‘upskilling’ events for GPs, physios and therapists based in West Midlands  
Yorkshire, the Humber, and the North East

The Yorkshire, Humber, and the North East (YHNE) Neuromuscular Network seeks to improve access to neuromuscular care across the region. 

The network is chaired by Dr Anne-Marie Childs, Dr Channa Hewamadduma, and Dr Chiara Marini-Bettolo. 

The Steering Group has representatives from Sheffield Teaching Hospital; Sheffield Children’s Hospital (Ryegate Centre); Leeds Teaching Hospital; Leeds Children’s Hospital; John Walton Muscular Dystrophy Research Centre, Newcastle; Hull University Hospital and Bradford University Hospital. 

The network meets several times a year to discuss current developments in the area, including: 

  • Support the coordination of neuromuscular care across primary, secondary, and tertiary services 
  • Exchanged services updates, case studies, and other information to develop professionals in the region 
  • Working in identifying gaps in neuromuscular services in the region and knowledge sharing and exchange between services 
  • Promote awareness of service provision across the region, looking at hospital services, patient flows, outreach clinics and local and independent support services 
  • Ensure neuromuscular disorders and associated needs are understood by commissioners and local teams resulting in more effective care 

Past events and activities 

  • Upskilling event for neuromuscular AHPs and CNS on Duchenne muscular dystrophy and Spinal Muscular Atrophy 
  • Developed strategic adult neuromuscular pathway, including rehabilitation pathway, respiratory and cardiac pathway, and palliative care pathway for services in the region 
  • Free information days and workshops for people with muscle wasting and weakening conditions and their families 
  • Scoping services exercises to identify gaps in neuromuscular services in the region

More information

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Neuromuscular Clinical Networks managed by the NHS

There are currently five NHS-managed Clinical Neuromuscular Networks across the UK in England, Scotland, and Wales. We take part in these networks as members of the Steering Group and regularly attend member meetings and events held by the networks. 

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Regional Neuromuscular Clinical Networks

Each regional clinical network and forum brings together NHS commissioners, people living with muscle wasting and weakening conditions and their families, expert neuromuscular clinicians, and allied health professionals. Find out more about the networks role, where they are and how we are involved. 

Questions about our regional clinical networks

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