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Myotonic dystrophy type 1: palliative care guidelines
  1. Derek Willis1,
  2. Tracey Willis1,2,
  3. Claire Bassie2,
  4. Gail Eglon3,
  5. Emma-Jayne Ashley4 and
  6. Chris Turner5
  1. 1University of Chester, Chester, UK
  2. 2Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust, Oswestry, UK
  3. 3Neuromuscular, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK
  4. 4Cure Myotonic Dystrophy UK, Charity UK, London, UK
  5. 5Neurology, University College London Hospitals NHS Foundation Trust, London, UK
  1. Correspondence to Derek Willis, University of Chester, Chester, CH1 4BJ, UK; derekwillis35{at}


Palliative care for adults with neuromuscular conditions is an emerging field. Previous guidelines regarding myotonic dystrophy and palliative care have only mentioned end-of-life care and little else. The following guidelines have been written using national experts as a description of best practice as part of the Dystrophia Myotonica National Care Guidelines Consortium.

  • Advance Care Planning
  • Neurological conditions

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  • Collaborators Written by DW following round table discussion.

  • Contributors DW: chair of a specific palliative care group for the myotonic dystrophy group and chief author. Committee members and reviewed the article: CB, GE and E-JA. TW: specific advice on traffic light system. CT: overall chair of the myotonic dystrophy guideline group.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.