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Adult neuromuscular disorders: a joint palliative/neuromuscular clinic
  1. Michael Macfarlane1,
  2. Tracey A Willis2,
  3. Yvette Easthope-Mowatt3,
  4. Claire Bassie3 and
  5. Derek Willis4
  1. 1Severn Hospice, Shrewsbury, Shropshire, UK
  2. 2Department of Paediatrics, Robert Jones and Agnes Hunt Orthopaedic NHS Trust Hospital, Oswestry, Shropshire, UK
  3. 3Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust, Oswestry, Shropshire, UK
  4. 4Medical, Severn Hospice, Telford, Shropshire, UK
  1. Correspondence to Dr Michael Macfarlane, Severn Hospice, Shrewsbury, Shropshire, UK; mike.macfarlane{at}nhs.net

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Neuromuscular disorders (NDs) include heterogeneous diseases that affect neurological muscle control and involve peripheral nerves or the muscle itself.1 The damage site and cause are varied, which makes prevalence estimates difficult. These progressive muscle-weakening and muscle-wasting conditions are often inherited. Muscular Dystrophy UK supports about 70 000 people affected by more than 60 such conditions.2 Palliative care has traditionally been associated with cancer care. Many patients with life-limiting non-malignant disease benefit from specialist palliative care.3 There has been an effort to improve palliative referrals for non-malignant disease by emphasising clinical need rather than diagnosis.4

Several studies have highlighted that patients with ND (who are not necessarily terminally ill) often suffer chronic pain.5–7 Early palliative care integration has been recommended for children with life-threatening …

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