Aims To develop an ICD10 coding framework to identify children and young people with life-limiting or life-threatening disease (LLLT). To use this framework to estimate hospital usage of patients with LLLT using Hospital Episodes Statistics (HES).

Methods Data from Martin House Children's Hospice was used to develop an ICD10 coding framework. A four digit ICD10 code was then assigned to each diagnosis and a final list of codes was compiled and completed by adding other appropriate codes including all malignant oncology codes. An extract of inpatient (2000–2010) HES data were requested where one of these ICD10 codes appeared in any diagnostic category in any patient aged under 25 years at admission.

Results The final ICD10 framework compiled consisted of 781 four digit ICD10 codes. Malignant oncology codes accounted for 445 codes with congenital malformations, deformations and chromosomal abnormalities having 90 codes. This was a marked year on year increase in episodes with a diagnosis of LLLT from 142 614 episodes in 2000/1 to 210 748 episodes in 2009/10 and the proportion of episodes for patients of a South Asian background increased from 8.6% in 2000/1 to 12.4% in 2009/10 while the black minority patients remained static (4.5% to 4.3%).

Conclusion Children and young people with a LLLT have a marked increase of inpatient hospital stays from 2000 to 2010. There is an increase in the proportion of these episodes from children and young people with a South Asian background.