Redbridge SERC

Muscular Dystrophy

Description

  • Muscular Dystrophy refers to a group of conditions that are categorised by muscle wasting.
  • This is a hereditary degenerative condition marked by progressive shrinking and wasting of the muscles.
  • The major type is Duchenne, manifesting in boys and is usually due to a gene carried by the mother and transmitted to her sons.
  • 100 boys with Duchenne Muscular Dystrophy are born each year.
  • There are some cases where there is no family history – these cases are thought to be due to spontaneous change in a gene.

Fact sheets

Training / Help

Support, advice and training can be obtained from

  • Newbridge Outreach
  • Physiotherapist
  • Occupational Therapist
  • School nurse
  • SERC
  • Student's consultant / specialist nurse linked to hospital clinics

Videos

Screenshot for video: Gowers sign

Gowers sign

A short 30 sec clip showing you a pupil getting up from the floor in the typical manner for a child with MD. It is called Gower's Sign – well worth …

Screenshot for video: Muscular dystrophy timeline

Muscular dystrophy timeline

A video timeline showing the progression of the disease.

Screenshot for video: Tomcat adapted trikes

Tomcat adapted trikes

Tomcat Trikes in action

Learning Aids

Please offer me a seat badge

Please offer me a seat badge

Available from:

TfL have recently introduced a badge to help Adults and Children who may have difficulty standing/ waiting on all TfL transport. It is designed to be supportive for hidden disabilities and medical conditions. The badges are free- you do notneed…

Illustrations

Muscular Dystrophy line drawing

Muscular Dystrophy line drawing

A line drawing illustrating the unusual way of walking many of the students develop. Key features include walking with chest out and shoulders positioned backwards.
Full Size image

Source: http://drugster.info/img/ail/459_462_2.gif

Frequently Asked Questions

  • What are the educational implications for students who have Muscular Dystrophy?
    • In Primary School the main considerations are around mobility and independence.
    • In PE pupils should be encouraged to access as many physical activities as possible to use the full range of movements for as long as possible.
    • Physiotherapists can provide help and support for PE lessons.
    • Newbridge Outreach can provide alternative physical activities e.g. Olympic Challenge
    • Pupils will tire easily - monitor fatigue / look for patterns in school week.
    • Because of increasing weakness in the shoulder girdle muscles, the child should not be pulled up by the hands or from under the arms.
    • Use of ICT early on to establish skills before they are required.
    • Extra time / scribe during tests / examinations
    • Pace your day - consider the effect of fatigue and how to support this.
    • In Secondary School the issues increase around care needs, independence, fatigue, peer support, transition.
  • What is the average progression for Duchenne Muscular Dystrophy?

    All students vary, even brothers within the same family can have a very different scale of progression.

    A rough quide would be;

    • 3-4 yrs- Parents/ Nursery/ School report a general awkwardness and clumsiness.
    • 5-7 yrs- Children start to need to help getting up off the floor or they' walk up' their legs to get up. The weakness develops from the feet upwards.
    • @ 10/ 12 yrs- Children rely upon a wheelchair for mobility and may need help with recording / eating / care tasks.
  • How can I support students in Key Stage 1?
    • Symptoms may not be apparent when the student first starts school.
    • Parents will need time and emotional support.
    • Newbridge Outreach staff can visit and provide training for staff
    • Physio and OT can be approached for further advice
    • Consider Statutory Assessment
    • Provide alternate / supportive play time activities
    • Be aware that cold can have a negative impact
    • The condition can be variable, pupils will have good and bad days
    • Steroids can be given, this can impact upon weight, physical wellbeing, energy. It is important to know when students are on and off steriods as it can impact on their ability to access school life.
    • Consider using disabled toilet - rails and greater space are often beneficial
    • Monitor stamina and fatigue, observe and record patterns
    • Physical wellbeing can be affected by tiredness and minor infections such as colds and coughs.
    • Introduce keyboard skills as early as possible.
    • Encourage students to express themselves and not become passive
  • How can I support a pupil at Key Stage 3?
    • Wheelchair accessible school
    • Access to supportive toileting space to allow for use of hoist
    • Staff to be trained in 'Moving and Handling' techniques
    • Support for motor skills in practical lessons e.g. DT, art
    • Access to ICT - consider access to smaller lightweight Netbooks (contact SERC)
    • Measure the impact of fatigue
    • Extra time in examinations / access to scribe / extra time
    • Provide the students with an effective means of catching up school work missed.
    • Sensitive support for care needs, consider access to male care staff if possible
  • What are the first signs of Muscular Dystrophy?
    • Around the age of 3 - 5 parents report general awkwardness and clumsiness, waddling walk, walking on toes, poor posture and protruding abdomen.
    • In Foundation Stage / Key Stage 1 students have increasing difficulty getting up from the floor and may 'walk up' his lower limbs with his hands. This is known as Gowers sign.
    • Weakness generally develops from the feet upwards to the front thigh muscles.
  • How can I support a pupil at Key Stage 2?
    • Statement in place
    • A wheelchair is likely to be used in KS2
    • Learning wheelchair skills
    • Disability awareness with peers
    • Greater input from Physio, OT and Newbridge Outreach
    • Staff training - Moving and Handling
    • Support for recording - using ICT, scribe, Cloze procedure
    • Alternative PE challenges ( contact physio/ Newbridge)
    • Support emotional needs and behaviour
    • Consider and monitor fatigue and impact upon attention and focus
  • Where can I find the most commonly asked questions relating to Facioscapulohumeral Muscular Dystrophy?

    http://www.fsh-group.org/questions.htm

    This is a support group partner of the Muscular Dystrophy Campaign, they provide help to improve the quality of life for those who have Facioscapulohumeral Muscular Dystrophy (FSH-MD).

  • How does Myotonic Dystrophy differ from Muscular Dystrophy?

    With most dystrophies such as Duchenne, the condition tends to affect hip and shoulder muscles.

    In Myotonic Dystrophy these areas are not affected intially and the initial muscles to be affected are face, neck, hands, feet and forearms

  • Muscular Dystrophy- Is there an regional advisor who can help us?

    Martin Chainani is the regional care advisor in London.

    Martin supports children with muscle disease at:

    Dubowitz Neuromuscular Centre
    Great Ormond Street Hospital
    London
    WC1N 3JH

    Martin has worked as a regional care advisor since 2002, having come from a background in social work in both Children and Adult Disability. He facilitates the Essex schools network meetings and helps to run several of the MDC Care Events in the South-East region. He has a special interest in raising awareness about the rights of people with muscular dystrophy and other disabilities.  

    Contact details:
    0207 405 9200 ext 0529
    ChainM@gosh.nhs.uk

  • Why would students with Muscular Dystrophy take steroids?

    Steroids are often given to students who have MD, as they can slow the rate of muscle deterioration.

    These can cause side effects and are often given in blocks eg two weeks on and two weeks off.

Family Resources

Net buddy- holiday information pack

Website: 
http://www.netbuddy.org.uk/info-packs/holidays/
Description

Net buddy is a great website- full of ideas, tips and specific information.

They have prepared a great Holiday factsheet that has a very comprehensive list of holidays for students who have special needs.

Whizz Kids

Website: 
http://www.whizz-kidz.org.uk/
Description

Whizz-Kidz is a charity aiming to provide disabled children and young customised mobility equipment, training, advice and life skills.

This Charity provides equipment to children that is not available on the NHS. They also run Wheelchair training courses/ Mobility centres in Dagenham and Havering.

Joseph Patrick Trust (JPT)

Phone: 
020 7803 4814
Email: 
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Website: 
http://www.muscular-dystrophy.org/how_we_help_you/equipment_grants
Description
  • The Joseph Patrick Trust (JPT) is the welfare trust of the Muscular Dystrophy Campaign and provides part-funding towards the cost of equipment for children and adults with muscle disease.
  • The JPT funds equipment, such as powered wheelchairs, adapted computers and electric beds, which promotes mobility and independence.

Outreach Services

Newbridge Outreach Service

Phone: 
0208 503 8773
Email: 
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Website: 
http://www.redbridgeserc.org
Description

Newbridge Outreach Service provides support to pupils with a range of learning, medical and physical difficulties.

http://www.newbridge.redbridge.sch.uk/introduction2

  • physical disability
  • physical disability with associated learning/communication difficulties
  • dyspraxia and related specific learning difficulties
  • perceptual difficulties
  • fine and gross motor skill development
  • difficulties with handwriting and alternative forms of recording.

Support is provided by

  • providing assessments
  • setting targets for learning / writing individual programmes
  • modify curriculum content and delivery
  • identify and use specialist resources
  • helping to provide support and advice to parents
  • delivering INSET for all staff, other agencies and parents

Request for support should come from the school the pupil is attending or another Agency involved.

Occupational Therapy

Phone: 
020 8924 6111
Website: 
http://www.redbridge.gov.uk/
Description

The Occupational Therapy Team are now based at Redbridge Child Development Centre (0 -19yrs), previously known as The Kenwood Centre in Barkingside.

S.E.R.C

Phone: 
0208 503 8773
Email: 
.(JavaScript must be enabled to view this email address)
Website: 
http://www.redbridgeserc.org
Description

Age range of pupils they support: 4- 19 yrs

Students they support:

  • SERC completes individual assessments for pupils who have complex needs or specific physical disability ( see SERC criteria form on home page)
  • SERC are happy to offer wider advice to support whole school SEN Inclusive ICT provision.
  • Training and support is free to all Redbridge Schools.

Range of support offered:

  • This centre based at Newbridge School, provides advice and support in the use of Information Technology with pupils who have special educational needs or a physical/ sensory disability.
  • S.E.R.C provides individual assessments of ICT needs of individual needs of pupils with SEN, in both mainstream and special schools.
  • Training for teachers and support staff who work with pupils with SEN.
  • Support and advice to parents/ carers of children who have SEN.

Address:                         S.E.R.C, Newbridge School, 258 Barley Lane, Ilford, Essex, IG38XS