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

Title

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

Creator

Fraser LK; Aldridge J; Manning S; O'Leary S; Miller M; McCulloch R; Childs AM

Publisher

European Journal Of Paediatric Neurology

Date

2011

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

326-330

Issue

4

Volume

15

Citation

Fraser LK; Aldridge J; Manning S; O'Leary S; Miller M; McCulloch R; Childs AM, “Hospice provision and usage amongst young people with neuromuscular disease in the United Kingdom,” Pediatric Palliative Care Library, accessed December 3, 2021, https://pedpalascnetlibrary.omeka.net/items/show/11586.

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