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

AimTo identify the nature of services for children and young people with progressive neuromuscular disorders (NMD) provided by Children’s Hospices in the UK.MethodsA 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.Results87% 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.ConclusionsChildren 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.

► What this paper adds, Children and young people with neuromuscular disease form a large proportion of the cases cared for by the Children’s Hospices in the UK. ► Insight into specific services provided for those with DMD in a single hospice. ► Few young people die in children’s hospices, despite the perception that hospices may focus on ‘end of life care’ The majority of stays by patients with DMD were ‘planned stays’, many of which included additional medical treatment. Many valued services are not currently available through NHS funds. ► There is a lack of similar adult based services to which the increasing number of young adults surviving past childhood with NMD can be referred.