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

https://doi.org/10.1016/j.ejpn.2011.02.003Get rights and content

Abstract

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.

Highlights

► 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.

Section snippets

Methods

During the first stage, a questionnaire requesting aggregate data on the number of patients with a neuromuscular condition was sent to all children’s hospices in the UK,as published on the ‘Children’s Hospice UK website’.7 The data requested was for the one year period 2007-8. The questionnaire asked about the provision of specific services (Planned Stays, Social Emergency, Medical Emergency, Step Down Care from hospital, Rehabilitation, End of life Care, Family Support, Parent Accommodation,

Survey results

The response rate was 87% (27 returned questionnaires out of 31 eligible hospices). The hospices that returned the questionnaire were from England (n = 22), Scotland (n = 2), Wales (n = 2) and Northern Ireland (n = 1). As the questionnaire asked for aggregate figures the results are for all neuromuscular (NM) conditions.

A total of 756 children and young people with NM condition were being cared for in the one year period between 2007 and 2008 by hospices in the UK (Mean 29 patients (range

Discussion

Children and young people with neuromuscular disease, especially those with Duchenne Muscular Dystrophy form a large proportion of the cases cared for by the Children’s Hospices in the UK. The age distribution of NM patients in the Children’s’ Hospices peaks at an age range of 12–16 years. At this age, most young people with a progressive NMD, such as DMD and the more severe limb girdle dystrophies will no longer be ambulant, a criterion for acceptance at some children’s hospices. Other factors

Conflicts of Interest

None.

Acknowledgements

The UK survey was initiated as part of the 2 year Heartsongs Project, an international collaboration initiated by Johns Hopkins University. LF was funded by Martin House Children’s Hospice.

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