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SHEFFIELD MND CARE AND RESEARCH CENTRE

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About the Neuromuscular Service

There are over 60 Neuromuscular conditions. Within South Yorkshire the 10 most prevalent conditions seen are (in order of prevalence):

  • Duchenne Muscular Dystrophy (DMD)

  • Charcot-Marie-Tooth Disease (Hereditary motor & Sensory Neuropathy)

  • Myotonic Dystrophy

  • Facioscapulohumeral muscular dystrophy (FSH)

  • Becker Muscular Dystrophy

  • Limb Gurdle Muscular Dystrophy

  • Spinal Muscular Atrophy

  • Inflammatory Myopathies including Inclusion Body Myositis

  • Hereditary Spastic Paraparesis (HSP)

  • Myasthenia Gravis

Neuromuscular Service and Clinic

 

About the Service

 

The service aims to offer advice and support to children, adults and families affected by muscle and nerve conditions.

This service is available to people living in South Yorkshire, North Derbyshire and North Lincolnshire who are seen by a consultant specialising in neuromuscular conditions.

The Specialist Neuromuscular Care Advisor can offer advice and support at diagnosis and beyond and act as a link between consultant clinic appointments. The types of advice and support vary according to individual need but can involve:

  • Providing information about the specific neuromuscular condition

  • Genetics

  • Mobility

  • Equipment

  • Benefits

  • Contact with others

Advice can be given face to face, via telephone, email or letter during home visits or clinic appointments.

For more information about the service please view service leaflet (PDF)

The Neuromuscular team also work closely with the Neurology Outreach Therapy Service for more details about this service please view their service leaflet (PDF)

How to access the Service

Individuals who are seen by a consultant specialising in neuromuscular conditions can self refer to the Specialist Neuromuscular Care Advisor - Margaret Jackson.

Individuals not seen by a consultant specialising in neuromuscular conditions can ask their GP or other doctor to refer them to the link consultant.

Children:

Dr Baxter - Consultant Paediatric Neurologist

Ryegate Children's Centre

Sheffield

S10 5DD

 

Adults:

Dr McDermott

Honorary Consultant Neurologist

Royal Hallamshire Hospital

Sheffield

S10 2JF

 

Dr Andrew Gibson

Consultant Neurologist

Royal Hallamshire Hospital

S10 2JF

 

Information and Training

The Muscular Dystrophy Campaign (MDC) provides free publications about specific neuromuscular conditions and can be accessed at www.muscular-dystrophy.org

On the MDC website you can also find information about:

  • Peer to Peer Support - more information can be found here

  • MD Links Service Guide - has a useful list of contacts where you can access help

  • Self management - A Self-management pack is available for individuals with adult onset Neuromuscular Conditions from the Muscular Dystrophy campaign an application form is available to download here.

  • Trailblazers - an national organisation of young campaigners

  • Guide to transition for 13 - 25 year olds with muscle disease - more information in relation to this can be downloaded here

  • Inclusive education  for children with a neuromuscular condition- guidance for primary and secondary schools

  • Wheelchair provision for children and adults with a neuromuscular condition

  • Housing needs of boys with DMD

  • Educational needs of boys with DMD

In focus- a regional fundraising update mailed with target MD. Contact Sara Wilcox s.wilcox@muscular-dystrophy.org

Advocacy service-the advocacy team offers free advocacy, support and advice to anyone with a neuromuscular condition who is experiencing difficulties with their local services. Telephone 020 7803 2853 or email campaigns@muscular-dystrophy.org

The Neuromuscular Centre (NMC) provides training opportunities for individuals with Muscular Dystrophy please see here for more information.

The Neuromuscular Centre (NMC) provides support for individuals with Muscular Dystrophy who are wanting to work, a leaflet about this support is available here.

Bluebell Wood Children's Hospice is a facility specifically for children with life limiting conditions - please see here for more information

Research

The MDC produce 2 quarterly magazines called Target MD and Target Research. To subscribe contact:

www.muscular-dystrophy.org/targetmdsubscribe 

TREAT- NMD is an EU funded network bringing together people with neuromuscular conditions, scientists; healthcare professionals and pharmaceutical companies working on treatments for these conditions. It also holds registries for some conditions. To find out more visit: www.treat-nmd.org.uk/registry

Transitional care from Children to Adult Services

If you have been seen in children's services the care advisor will follow you through to adult services and Margaret is the main point of contact in relation to transitional care.

The Muscular Dystrophy Campaign also provide information on transitional services and an application form for more information in relation to this can be downloaded here

For any further information please contact the Specialist Neuromuscular care advisor at Sheffield Teaching Hospitals NHS Foundation Trust:

Margaret Jackson

Neurosciences department

12 Claremont Crescent

Sheffield

S10 2JF

Tel: 0114 271 1898

Mob: 07887833 383

mjackson@nhs.net

 

An answer phone is available out of office hours. For urgent advice please contact your own GP service.

Meet the Neuromuscular care team

Find out more about our team members


Useful Links

Action Duchenne

Charcot-Marie-Tooth UK

Duchenne Families Support Group

FSH- MD Support Group

Buillan-Barre Syndrome Support Group

Jennifer Trust for Spinal Muscular Atrophy

Motor Neurone Disease Association

Muscular Dystrophy Campaign

Myasthenia Gravis Association

Myositis Support Group

Myotonic Dystrophy Support Group

The Neurological Alliance

The Neuropathy Trust

Bluebell Wood Children's Hospice

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