Emma Mowat

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• Emma Mowat
• Head of MDC Support Services
• Freephone 0800 652 6352
• www.muscular-dystrophy.org

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1. The Muscular Dystrophy Campaign

• Who we are
• What we do
• How we help
• Who we refer to
• Work with schools

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2. Who we are

• The only national charity focusing on all muscle
  disease
• Pioneer in the search for treatments and cures
  since 1959
• Dedicated to improving the lives of all people
  affected by muscle disease
• Rely almost entirely on voluntary donations to
  support our vital work

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3. What we do

• Provide free practical and emotional support
• Fund world-class research to find effective
  treatments and cures
• Campaign to raise awareness and bring about
  change
• Award grants towards the cost of specialist
  equipment

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4. Information and support

• Call 0800 652 6352 (freephone)
• Email info_at_muscular-dystrophy.org
• Write to Muscular Dystrophy Campaign
• 61 Southwark Street
• London
• SE1 0HL
• Visit our website www.muscular-dystrophy.org
• Open weekdays from 9am- 5pm

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5. Publications

• Wide range of booklets, fact sheets and
  guidelines on specific conditions, equipment,
  medical and social issues
• Adaptations manual CD
• Adult Self-Management Pack
• Education, physiotherapy, wheelchairs
• Transition coming soon!

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6. Regional Care Advisors (R.C.As)

• Employed by the MDC, in conjunction with certain
  hospital trusts
• Specialist knowledge of the issues facing people
  with NM conditions
• Liaise with statutory services, education
  authorities and other service providers
• Provide advice and support

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RCAs based at hospitals/ clinics in

• Glasgow
• Edinburgh
• Belfast
• Newcastle
• Leeds
• Liverpool
• Nottingham
• Birmingham
• Oxford
• Bristol
• London
• Taunton

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7. Care Events

• Information days- For those who want to learn
  more about specific conditions/circumstances
• Study days- For those involved in education of
  people with NM conditions
• Family weekends- Social information weekends
  for families living with NM conditions
• Professional networks- Peer support and
  information sharing- School, Physio, O.T.

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8. Muscle Centres

• Staffed by clinicians and health professionals
  with interest and experience in the field
• Translate basic science findings into clinical
  trials and potential new treatments
• Some centres provide on-site research and
  training projects
• Ultimate aim for this work is development of
  improved services for patients

Referrals should be made in writing by GPs
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9. Partner charities groups

• For some conditions, specific groups offer
  informal support, advice and information
• Talk to someone who has been there
• Attend condition specific events
• Details on the MDC website- or contact the
  Information Service
• 0800 652 6352
• www.muscular-dystrophy.org

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Matthew.lanham_at_nmcentre.com Rosie Paver, Head of
Physiotherapy 01606 860 911 Rosie.paver_at_nmcentre.c
om
10. The Joseph Patrick Trust

• The welfare fund of the Muscular Dystrophy
  Campaign
• Assistance with applications for financial grants
  towards the cost of essential items of equipment
• Tesco charity of the year 2009-2010- 3m funding
  for equipment up to age 19
• Visit the Muscular Dystrophy Campaign website or
  call 020 7803 4814

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11. The Neuromuscular Centre (NMC)

• Physiotherapy, hydrotherapy and active exercise
  programmes for adults
• Train and gain a range of skills and
  qualifications in Graphic Design and IT
• NMC Design Print offers employment
  opportunities in graphic design, business
  administration
• Regular newsletter One Voice
• Matthew Lanham 01606 860 911
• www.nmcentre.com

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12. Schools and muscle disease

• Approx 2,500 children with muscle disease
  attending schools in the UK at any given time
• Individuals needs change as they progress
• Many transfer to special school because needs
  arent met
• Most children can be fully included

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13. Working with children

• be fully accessible
• act on bullying
• collaborate with parents
• develop a supportive curriculum
• ask for expert help
• plan for the future and anticipate needs
• gather information
• Demonstrate positive attitude to disability

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14. Working with parents

• review- one annual review isnt enough, build
  them in regularly
• support- Parents shouldnt provide back up for
  trips/ be called in to give tablets to their
  child
• talk to them- Request that child leaves- parents
  werent aware there was a problem!
• understand- Might be late due to time taken
  getting ready, or busy after school with
  physiotherapy appointments

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15. MDC Resources

• Online and written support materials- Inclusive
  education for children with muscular dystrophy
  and other neuromuscular conditions
• Information service
• Schools Network
• Others
• Jennifer Trust for SMA
• Duchenne Family Support Group
• Contact a Family Directory

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Thank you!

• Emma Mowat
• Head of MDC Support Services
• Freephone 0800 652 6352
• www.muscular-dystrophy.org