SWNODN Executive Board

The SWNODN Executive Board consists of doctors, allied healthcare professionals, Trust management, commissioners and patients, carers and family members who have an interest, or expertise, in the Network’s aims, development and outcomes. Provider organisations that deliver neuromuscular services within the SWNODN’s geographical area are responsible for the delivery of SWNODN recommendations, in partnership with the host organisation (North Bristol NHS Trust), and therefore also have representation on the Board. The Board operates to the The Governance Model for Operational Delivery Networks; South West Specialised Commissioning. 

The SWNODN Executive Board Membership is required to be a multi-disciplinary group; therefore its membership consists of a number of health care professionals specialising in respiratory, cardiology, genetics, clinical psychology and therapy services.  We also ensure that we have a patient voice at our Board meetings via a member of Muscular Dystrophy UK and patient, carer and family representatives. 

Our Network Board meets three times a year to review the Work Programme and agree actions to be taken forward by the Operational Management Team in line with the Board’s Terms of Reference. 

The South West Neuromuscular Operational Delivery Network (SWNODN) is one of a series of Operational Delivery Networks (ODNs) in the South West of England.  

The SWNODN is specifically responsible for the care of individuals with a neuromuscular condition in the South West, and currently is the only one of its kind in England.   We work within the boundaries of the following Integrated Care Boards:

• NHS Bath & North East Somerset, Swindon and Wiltshire ICB
• NHS Bristol, North Somerset and South Gloucestershire ICB
• NHS One Devon ICB
• NHS Gloucestershire ICB
• NHS Cornwall and Isles of Scilly ICB
• NHS Somerset ICB

• Myositis:
  • Infective myositis  
  • Tropical pyomyositis
  • Dermatopolymyositis 
  • Polymyositis 
  • Interstitial myositis 
• Calcification and ossification of muscle
  • Myositis ossificans traumatica
  • Myositis ossificans progressiva 
  • Fibrodysplasia ossificans progressiva
  • associated with quadriplegia or paraplegia
  • associated with burns 
• Paralytic calcification and ossification of muscle 
• Foreign body granuloma of soft tissue, not elsewhere classified 
• Disorders of myoneural junction and muscle in diseases classified elsewhere 
• EXCLUDES:
  • foreign body granuloma of skin and subcutaneous tissue, calcific tendinitis, tendinitis of shoulder
  •  Juvenile dermatomyositis  - excluded (Rheumatolgy referral)Glycogen storage disease: (Excluded – usually referred to Metabolic team)
  • Cardiac glycogenosis
  • Andersen
  • Cori
  • Forbes
  • Hers
  • McArdle
  • Pompe
  • Tauri
  • von Gierke
• Liver phosphorylase deficiency (Excluded – usually referred to Metabolic team)

• Mitochondrial myopathy

• Myotonic Dystrophy 1 (DM1)
• Myotonic Dystrophy 2 (DM2)
• Myotonia :
  • chondrodystrophic
  • drug-induced symptomatic
• Myotonia congenita:
  • dominant [Thomsen]
  • recessive [Becker]
  • Neuromyotonia [Isaacs]
  • Paramyotonia congenita
  • Pseudomyotonia

• Myasthenia gravis 
• Toxic myoneural disorders 
• Congenital myasthenia syndromes
• Other specified myoneural disorders 
•  Myasthenic syndromes in endocrine diseases
• Myasthenic syndromes in:
  • diabetic amyotrophy  
  • thyrotoxicosis [hyperthyroidism]
  • Eaton-Lambert syndrome
  • Other myasthenic syndromes in neoplastic disease
  • Myasthenic syndromes in other diseases classified elsewhere 

EXCLUDES:  botulism and transient neonatal myasthenia gravis.

• Spinal Muscular Atrophy (SMA) and related syndromes:
  • Infantile spinal muscular atrophy, type I [Werdnig-Hoffman] 
  • Other inherited spinal muscular atrophy
  • Progressive bulbar palsy of childhood [Fazio-Londe]
  • SMA adult form
  • SMA childhood form, type II
  • Distal SMA
  • SMA juvenile form, type III [Kugelberg-Welander]
  • SMA scapuloperoneal form
• Systemic atrophies primarily affecting central nervous system in diseases classified elsewhere 
• Primary disorders of muscles 
• Paraneoplastic and neuropathy
  • Sensorial paraneoplastic neuropathy [Denny Brown] 
• Hereditary motor and sensory neuropathy
  • Charcot-Marie-Tooth
  • Déjerine-Sottas
  • Refsum's disease 
  • Hereditary motor and sensory neuropathy, types I-IV
  • Hypertrophic neuropathy of infancy
  • Peroneal muscular atrophy (axonal type) (hypertrophic type)
  • Roussy-Lévy syndrome
• Neuropathy in association with hereditary ataxia , such as Ataxia Telangectasia
• Idiopathic progressive neuropathy
• Inflammatory polyneuropathy
  • Guillain-Barré syndrome 
  • Acute (post-) infective polyneuritis
• Drug-induced/Alcoholic/Toxic Agent/Radiation induced polyneuropathy 
• Serum neuropathy 
• Polyneuropathy in infectious and parasitic diseases classified elsewhere:
  • diphtheria 
  • infectious mononucleosis         
  • leprosy
  • Lyme disease
  • mumps
  • postherpetic
  • syphilis, late
  • congenital syphilis, late
  • tuberculous
  • Diabetic polyneuropathy
• Polyneuropathy in:
  • other endocrine and metabolic diseases   
  • neoplastic disease
  •  nutritional deficiency
  • systemic connective tissue disorders
  • other musculoskeletal disorders
  • Uraemic neuropathy  

INCLUDES:  arthrogryposis multiplex congenita, metabolic myopathies

EXCLUDES: Dermatomyositis 

• Muscular dystrophy, including
  • autosomal recessive, childhood type
  • benign [Becker]
  • benign scapuloperoneal with early contractures [Emery-Dreifuss]
  • distal
  • facioscapulohumeral
  •  limb-girdle
  • ocular
  • oculopharyngeal
  • scapuloperoneal
  • Duchenne
• INCLUDES: congenital muscular dystrophy, congenital myopathy, including:
  • central core disease
  • minicore  disease
  • multicore disease
  • Fibre-type disproportion
  • myotubular (centronuclear)
  • nemaline
  • unspecified hereditary myopathy
• Drug-induced/Alcoholic/toxic agent/inflammatory myopathy 
• Myopathy in infectious/parasitic disease
• Myopathy in endocrine disease
  • hyperparathyroidism
  • hypoparathyroidism
  • Thyrotoxic myopathy
• Myopathy in metabolic disease
  • glycogen storage disease
  • lipid storage disorders  
• Periodic paralysis, including:
  • Periodic paralysis (familial)
  • hyperkalaemic  
  • hypokalaemic
  • myotonic
  • normokalaemic
• Myopathy in other diseases:
  • rheumatoid arthritis
  • scleroderma
  • sicca syndrome [Sjögren]
  • systemic lupus erythematosus
• Paraneoplastic neuromyopathy
  • Carcinomatous neuromyopathy

The South West Neuromuscular Operational Delivery Network (SWNODN) covers a particular definition set of neuromuscular conditions specified by NHS England. We have split these down into six main categories as listed below. 

• Mitochondrial diseases
• Muscular Dystrophies and Myopathies
• Myasthenias
• Myotonias
• Neuropathies
• Other/Unclassified

If you do not see your condition listed, please do call the Network office and we will see if we can support you in another way or redirect you to the most appropriate organisation. 

The network does not cover the following conditions as there are other organisations/charities that offer a great deal of support for these patients:

• Multiple sclerosis
• Motor Neurone Disease
• Parkinson’s Disease
• Cerebral Palsy

The South West Neuromuscular Operational Delivery Network (SWNODN) currently has a Network Manager, Natalie Smith, and Network Coordinator, Jo McTiernan, based at Southmead Hospital Bristol.

For any queries relating to the SWNODN please contact the Network Manager in the first instance on 0117 41 41185.