Hospice provision and usage amongst young people with neuromuscular disease in the United Kingdom

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Publication details

JournalEuropean Journal of Paediatric Neurology
DatePublished - Jul 2011
Issue number4
Number of pages5
Pages (from-to)326-330
Original languageEnglish


Aim: To identify the nature of services for children and young people with progressive neuromuscular disorders (NMD) provided by Children’s Hospices in the UK. Methods: A questionnaire requesting aggregate data on the number of patients with a neuromuscular condition was sent to all children’s hospices in the UK, in addition, specific data was collected on services for young people with DMD presenting to a single local hospice. Results: 87% of eligible hospices responded (27/31). 756 young people with an NM condition were being cared for by the hospices. These patients accounted for a mean of 17% of the total hospice population (range 5–35%). The age at which young people were required to leave the children’s hospices varied from 18 up to 35 years. 73% of ‘visits’ were described as ‘planned stays’. Although ‘end of life care’ is provided, few young people with NMD died in a hospice. Conclusions: Children and young people with NMD form a large proportion of the Children’s Hospice’s caseload. Many valued services provided by children’s hospices are not available through NHS funding. The lack of similar adult based services is a concern as increasing numbers of young people are surviving into adulthood.

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