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Emma Mowat Head of MDC Support Services Freephone 0800 652 6352 muscular-dystrophy

Emma Mowat Head of MDC Support Services Freephone 0800 652 6352 www.muscular-dystrophy.org. 1. The Muscular Dystrophy Campaign. Who we are What we do How we help Who we refer to Work with schools. 2. Who we are. The only national charity focusing on all muscle disease

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Emma Mowat Head of MDC Support Services Freephone 0800 652 6352 muscular-dystrophy

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  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@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@nmcentre.com Rosie Paver, Head of Physiotherapy 01606 860 911 Rosie.paver@nmcentre.com 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 aren’t 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 isn’t enough, build them in regularly • support- Parents shouldn’t provide back up for trips/ be called in to give tablets to their child • talk to them- Request that child leaves- parents weren’t 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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