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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 …
Contributors All of the authors were part of the multidisciplinary teams described. This paper was written by MM and DW with approval by TAW, YE-M and CB.
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.