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Neuromuscular conditions for physicians – what you need to know

Andrew Frank
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DOI: https://doi.org/10.7861/clinmedicine.16-5-496
Clin Med October 2016
Andrew Frank
Vocational Rehabilitation Association and visiting professor, Brunel University London, UK
Roles: Trustee
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Editor – I welcome very much the excellent but very concise conference report on neuromuscular conditions by Edwards and Phillips.1 However, its brevity results in some of the points raised by the speakers or in discussion being omitted.

Developing children into young adults is challenging, particularly as this should now include preparation for a working life.

As it is accepted that Duchenne muscular dystrophy (DMD) is a disease of adulthood,2 much more thought needs to be given to the preparation of children with DMD for adulthood; this is a discussion that needs to begin long before the age of transition. By the age of attending secondary school, the following need to be addressed:

  • the young adult becomes the important person in the paediatric consultation rather than the parents3

  • a discussion about the need to prepare for adult life by withdrawal of parental care during adolescence (as is expected for able-bodied youngsters as they mature).4

The use of assistive technology (unlisted by Edwards and Phillips) – eg powered mobility5 and environmental control units4 – to facilitate personal independence both inside and outside the home supports the withdrawal of parental care. It has been suggested that ‘decreasing the physical strain on parents may also facilitate the emotional separation that naturally occurs in most able-bodied youngsters as they mature’.3

Later, education needs to include:

  • exposure to appropriate role models, particularly to working adults with disabilities6

  • access to facilities to promote self-confidence, eg sport5 and camping7

  • access to work experience during their schooling.7

The appreciation of the work of the voluntary sector (eg Whizz-Kidz7) is often neglected in considering ways of supporting disadvantaged young people and again was not included in the list from Edwards and Phillips.

Conflicts of interests

The author has no conflicts of interests to declare.

  • © Royal College of Physicians 2016. All rights reserved.

References

  1. ↵
    1. Edwards L
    , Phillips M. Neuromuscular conditions for physicians - what you need to know. Clin Med 2016;16:259–61.
    OpenUrlAbstract/FREE Full Text
  2. ↵
    1. Passamano L
    , Taglia A, Palladino A, et al. Improvement of survival in Duchenne Muscular Dystrophy: Retrospective analysis of 835 patients. Acta Myologica 2012;31:121–5.
    OpenUrlPubMed
  3. ↵
    1. Transition Frank AO.
    : provision of assistive technology can enhance independence and reduce carer strain. Clin Med 2007;7:198.
    OpenUrlFREE Full Text
  4. ↵
    1. Paul SN
    , Frank AO, Hanspal RS, Groves R. Exploring environmental control unit use in the age group 10–20 years. Int J Ther Rehabil 2006;13:511–6.
    OpenUrl
  5. ↵
    1. Evans S
    , Neophytou C, De Souza LH, Frank AO. Young people’s experiences using electric powered indoor-outdoor wheelchairs (EPIOCs): potential for enhancing users’ development? Disabil Rehabil 2007;19:1281–94.
    OpenUrl
  6. ↵
    1. Bender LF.
    1980 presidential address to the American academy for cerebral palsy and developmental medicine. Develop Med Child Neurol 1981;23:103–8.
    OpenUrlPubMed
  7. ↵
    1. Whizz-Kidz
    . Work placements. Available online at www.whizz-kidz.org.uk/get-our-help/young-people/work-placements/upcoming-work-placements [Accessed 29 June 2016].
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Neuromuscular conditions for physicians – what you need to know
Andrew Frank
Clinical Medicine Oct 2016, 16 (5) 496; DOI: 10.7861/clinmedicine.16-5-496

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Neuromuscular conditions for physicians – what you need to know
Andrew Frank
Clinical Medicine Oct 2016, 16 (5) 496; DOI: 10.7861/clinmedicine.16-5-496
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