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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. 1 University of Chester, Chester, UK
  2. 2 Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust, Oswestry, UK
  3. 3 Neuromuscular, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK
  4. 4 Cure Myotonic Dystrophy UK, Charity UK, London, UK
  5. 5 Neurology, University College London Hospitals NHS Foundation Trust, London, UK
  1. Correspondence to Derek Willis; derekwillis35{at}hotmail.com

Abstract

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

https://doi.org/10.1136/spcare-2023-004748

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    Footnotes

    • 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.