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

SWNODN Conditions Covered

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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. 

SWNODN conditions covered

 

 

 

 

 

 

 

 

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:

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 Network Management

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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.

 

Network Manager

Natalie Smith

Natalie Smith joined the SW Neuromuscular ODN in March 2021 as the Network Manager.  Natalie is based at Southmead Hospital, Bristol.

Contact:  natalie.smith2@nbt.nhs.uk

Network Co-ordinator

Jo McTiernan

Jo McTiernan joined the SW Neuromuscular ODN in January 2018.  Jo is based at Southmead Hospital, Bristol.

Contact:  joanna.mctiernan@nbt.nhs.uk

Network Co-ordinator (Devon and Cornwall)

Lynne Ferris

Lynne Ferris started working as a Network Co-ordinator for the South region of the Network in March 2020.  Lynne is based at Mount Gould Hospital Plymouth.

Contact: lynne.ferris@nhs.net

 

Medical Secretary to Dr Merrison

Karen Parker

Karen is based at Southmead Hospital, Bristol, providing secretarial support to Dr Andria Merrison within the neuromuscular team.

Contact:  karen.parker@nbt.nhs.uk

 

Medical Secretary to Dr Majumdar and Dr Vijayakumar

Jane Berry

Jane is based at Bristol Children's Hospital and provides secretarial support to both paediatric neurologists Dr Majumdar and Dr Vijayakumar.

Contact: jane.berry3@uhbw.nhs.uk

 

SWNODN Neuromuscular Advisors

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The South West Neuromuscular Operational Delivery Network (SWNODN) employs four Neuromuscular Advisors hosted by Southmead Hospital Bristol and Derriford Hospital Plymouth.  Their role is to be a key resource for children and adults who have a neuromuscular condition, and their families and carers.  Each Neuromuscular Advisor covers a region of the South West.   They attend the paediatric and adult neuromuscular clinics to meet with patients and provide additional information at the point of diagnosis.  They are also available to discuss issues over the phone or to visit patients and families at home if necessary. They can facilitate access to local help and support services as needed, to optimise independent living and patient self-management as much as possible. 

Find out more about the Neuromuscular Advisor's role: 

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Southmead Hospital Bristol

Elaine Burrows

Provides support for children and adults in Gloucestershire, South Gloucestershire, Bath, North East Somerset, Swindon and Wiltshire.

Mount Gould Hospital Plymouth

Clare Stayt

Clare is a Neuromusuclar Advisor based at Mount Gould Hospital in Plymouth.  She provides support for children and adults in the Devon area.

Mount Gould Hospital Plymouth

Tamara Higgins (nee Eaton)

Tamara is a Neuromusuclar Advisor based at Mount Gould Hospital in Plymouth.  She provides support for children and adults in the Cornwall area.

Southmead Hospital Bristol

Ann Morgan

Provides support for children and adults in Bristol, North Somerset and Somerset.

SWNODN Neuromuscular Physiotherapists

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The South West Neuromuscular Operational Delivery Network (SWNODN) employs three Paediatric Neuromuscular Physiotherapists and three Adult Neuromuscular Physiotherapists.   The Neuromuscular Physiotherapists attend paediatric, transition and adult neuromuscular clinics around the region, providing specialist advice and support to patients, families and carers.  They are also a valuable resource for advising, supporting and training local teams in various aspects of the specific physiotherapy assessment and management of neuromuscular conditions.  Community Physiotherapists are always very welcome to attend specialist neuromuscular clinics along with their patients.  The Neuromuscular Physiotherapists will liaise with Community Physiotherapists about their patients as necessary, but especially before and after a clinic visit.

Our Neuromuscular Physiotherapists may attend home or school visits, as required, with a Neuromuscular Advisor and can offer ongoing advice and support to patients and their families to help them deal with the physical challenges of a neuromuscular condition. 

Southmead Hospital Bristol

Nicola Grose (nee Doran)

Nicki graduated as a Physiotherapist from the University of Southampton in 2002. She has worked in several areas of physiotherapy at North Bristol Trust and within the community for North Somerset Community Services. This work included intensive input after a hospital admission and facilitating patients in the community to continue self-management.  She joined the SW Neuromuscular ODN in February 2011 and covers the northern part of the South West region working with adults with a neuromuscular condition. 

Nicki’s experience in hospitals and the community, together with her neurology and rehabilitation knowledge, gives her a great understanding of the mobility and functional difficulties of people living with a neuromuscular condition.  She has developed a holistic, flexible and patient-led service and works with a multi-disciplinary team providing a service for adults and patients in transition from paediatric to adult neuromuscular services to facilitate a seamless transfer.

Her overall objective is to ensure people living with a neuromuscular condition feel empowered, informed and able to maximise their independence with the guidance from the Neuromuscular team working jointly with their local therapy services.

Bristol Royal Hospital for Children

Faye Mason-Elias

Faye joined the SW Neuromuscular ODN as a Specialist Paediatric Physiotherapist in January 2019.

Cornwall Partnership NHS Foundation Trust

Janet McCay

Janet is a Specialist Neuromuscular Physiotherapist for adults in Cornwall.

Royal Cornwall Hospital Truro

Jackie Watson

Jackie Watson joined the SW Neuromuscular ODN as a Specialist Paediatric Physiotherapist in January 2017.

Derriford Hospital Plymouth

Claire Frimpong-Ansah

Claire is the SW Neuromuscular ODN Paediatric Specialist Physiotherapist for patients in Devon.

Mount Gould Hospital Plymouth

Georgina Grimshaw

Georgina works as the SW Neuromuscular ODN Specialist Physiotherapist for patients in Devon.