SWNODN - Bristol, North Somerset & South Gloucestershire (BNSSG)

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Please see information below on the neuromuscular clinics available if you live in the Bristol, North Somerset or South Gloucestershire areas.  For any specific information about neuromuscular clinic appointments, please contact the relevant hospital or speak to your Neuromuscular Advisor.  

To find out about other support and resources in your area, we suggest you go to Muscular Dystrophy UK's support page which includes a search function to help find services/support in your area.  

Please also remember that you can contact your Neuromuscular Advisor in between clinic appointments if you need any advice or support.

 

Paediatric Neuromuscular Clinics


Location:

Bristol Royal Hospital for Children

Who will you see:

Consultant Paediatric Neurologist
Neuromuscular Advisor 
Paediatric Neuromuscular Physiotherapist
Clinical Nurse Specialist

Details:

Weekly paediatric neuromuscular clinic every Monday afternoon.

Contact Details:

Enquiries about clinic appointments can be made via the neuromuscular secretary on 0117 342 0502.

Useful information:

Transition Clinics


Location:

Southmead Hospital Bristol

Who will you see:

Consultant Paediatric Neurologist
Consultant Neurologist
Neuromuscular Advisor
Paediatric Neuromuscular Physiotherapist
Specialist Neuromuscular Physiotherapist
Counselling Psychologist

Details:

This clinic is held every other month on the second Tuesday of the month.  It is aimed at preparing children and their families for the transfer from paediatric to adult neurology services.

Contact Details:

Enquiries about clinic appointments can be made via the secretary on 0117 4146688 or Southmead Outpatient Booking Team 0300 5550103

Useful information:

Adult Neuromuscular Clinics


Location:

Southmead Hospital Bristol

Who will you see:

Consultant Neurologist
Counselling Psychologist
Specialist Neuromuscular Physiotherapist
Neuromuscular Advisor

Details:

Dr Merrison holds a weekly neuromuscular clinic on a Thursday morning and also every other month on the second Tuesday afternoon of the month.  

Dr Wood-Allum holds neuromuscular clinics on the fourth Thursday of every month, and every other month holds a further clinic on the second Thursday of the month.

Contact Details:

Enquiries about clinic appointments can be made via the secretary on 0117 4146688 or Southmead Outpatient Booking Team 03005550103

Useful information:

Contact SWNODN

South West Neuromuscular Operational Delivery Network
Office 7, Gate 18, Level 1, Brunel Building
Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB

Telephone:  0117 4141184
or 0117 4141185

E-mail: swneuromuscularodn@nbt.nhs.uk

SWNODN - Bath & North East Somerset (BANES)

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Unfortunately, we do not currently hold neuromuscular clinics in the Bath and North East Somerset area. However, you would be in the catchment area for the Bristol clinics.

There may be other support and resources in the Bath and North East Somerset area that you can access. We suggest you go to Muscular Dystrophy UK's support page which includes a search function to help find services/support in your area. 

Please also remember that you can contact your Neuromuscular Advisor in between clinic appointments if you need any advice or support.

SWNODN Executive Board

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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. 

SWNODN Governance

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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:

 

SWNODN Other/Unclassified

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  • 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)

Myasthenias

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  • 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.

Neuropathies

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  • 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 Dystrophies & Myopathies

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  • 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