Commissioned by NHS England, this report describes the the characteristics and levels of resource required by children and young people (CYP) (0-25 years) with life limiting conditions and/or life threatening conditions (LLC). The scope of this report does not attempt to explain or address the complexity of life threatening conditions and palliative end of life care for children and young people; it does however highlight a new and emerging population of significance for the NHS in England.
People aged 0-25 span both paediatric and adult services, Clinical Commissioning Groups and Specialised and Direct Commissioning. It is much reported that there is a broad and complex age transition period in this cohort and this report therefore covers this whole period.
This report draws on information from a range of primary sources including Hospital Episode Statistics (HES), Secondary Users Service (SUS) and ONS population projections and death registrations to provide intelligence on the prevalence, acute utilisation and characteristics of these complex patients. Also available is a companion report commissioned by NHS England describing the status and context of palliative and end of life care services in the West Midlands, it may be helpful and provide additional context to read these two reports in conjunction.
The main chapters of the report focus on;
Chapter 2 – Prevalence analyses – Identifies CYP with an LLC registered with a GP practice in the West Midlands who have been in contact with hospital services since April 2006. The chapter examines how prevalence has changed over the past decade and summarises the cohorts by demographics and condition characteristics.
Chapter 3 - Acute healthcare utilisation – Identifies and summarises all acute hospital activity in HES for the cohort including A&E, Inpatients and Outpatients. Activity is identified whether it is related to the LLC or not, and is described in terms of overall trends and demographic and condition characteristics between 2011/12 and 2015/16. The cost of activity by CCG, STP and provider is also summarised in this section. Activity in the 12 months prior to death has been examined at each point of delivery for those who died in 2015/16.
Chapter 4 – Historical deaths and forecasts - Examines the trend in deaths for all CYP in the West Midlands (0-25 years) over the past decade and compares this to deaths in our cohort. Deaths for all CYP are forecasted until 2022/23.
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