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In 2012 more than 2000 children and young people (CYP) aged 1–19 died in England and Wales.1 For CYP, cancer, nervous system, respiratory, cardiovascular and congenital conditions account for about 60% of deaths.2
The nine independent hospices across North East England have formed a collaborative (Hospices North East, HNE) working together to enable collective description of the type and volume of services provided, and the patients and their families served. We describe the services provided for CYP.
Data sharing agreements were developed with each hospice participating in the HNE initiative, and data entry form template implemented.3
Individual patient level or aggregate counts of activity were collected. No patient identifiable data were shared. Children were those aged 16 or less, but we also included those aged 16–18 and 18–25. We included all CYP discharged from the hospice within …
Contributors All of the authors contributed to the development of the study. AB and AF developed the data capture tools and provided the analysis. CN collected the data and put in place the agreements to share data between independent organisations. SG, JE, PW, AE and MCM provided interpretation of the data. All authors reviewed the drafts and approved the final draft. JN wrote the manuscript.
Funding This study was funded by James Knott Trust.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; internally peer reviewed.
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