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Emma Mowat

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Employed by the MDC, in conjunction with certain hospital trusts ... Contact a Family Directory. Thank you! Emma Mowat. Head of MDC Support Services ... – PowerPoint PPT presentation

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Title: Emma Mowat


1
  • Emma Mowat
  • Head of MDC Support Services
  • Freephone 0800 652 6352
  • www.muscular-dystrophy.org

2
1. The Muscular Dystrophy Campaign
  • Who we are
  • What we do
  • How we help
  • Who we refer to
  • Work with schools

3
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

4
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

5
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

6

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!

7
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

8
RCAs based at hospitals/ clinics in
  • Glasgow
  • Edinburgh
  • Belfast
  • Newcastle
  • Leeds
  • Liverpool
  • Nottingham
  • Birmingham
  • Oxford
  • Bristol
  • London
  • Taunton

9
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.

10

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
11

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

12

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

13
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

14
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

15
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

16
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

17
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

18
Thank you!
  • Emma Mowat
  • Head of MDC Support Services
  • Freephone 0800 652 6352
  • www.muscular-dystrophy.org
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