12.1 Introduction

The Darzi Next Stage Review⁽¹⁾ has highlighted palliative care as one of the main areas of focus in 2008, the 60th anniversary of the founding of the NHS. Palliative Care often has connotations of death amongst cancer patients and the elderly. However, the Local Darzi reviews have brought into wider focus the palliative care needs of non-cancer patients and in particular Paediatric Palliative Care.

This chapter presents data on deaths amongst children under the age of 17 years over a 5-year time frame. In addition, it quantifies the numbers of deaths, types of conditions and the numbers found in each PCT.

12.2 Methods

Death certificate data was obtained from the West Midlands Public Health Observatory subject to confidentiality rules. This was for the time frame 1st January 2001 – 31st December 2006 inclusive and for children whose age at time of death was 16 or below.

12.3 Results

There were some lead and lag time records in the dataset. These are deaths that appeared on the dataset probably due to time of registration despite the actual date of death preceding the time frame (lead time). Lag time deaths are deaths that occurred late in the period in question BUT the death certificates were registered after. This can be observed at the beginning and end of time series seen in Figure 12.1.

Figure 12.1: Deaths Amongst West Midlands Children under 16 years 2001 – 2006

Deaths Amongst West Midlands Children under 16 years 2001 – 2006

Table 12.1 describes the primary cause of deaths by ICD (International Classification of Disease) chapters of the main diagnosis on the death certificate. There are age related causes of deaths (e.g. certain conditions originating in the perinatal period and congenital malformations). However just under half of all deaths are associated with other ICD chapters. It should be noted that a significant number of death certificate data had no diagnoses recorded at all.

Table 12.1: ICD Chapter of Primary Cause of Death Amongst West Midlands Children under 16 years 2001 – 2006

The deaths described are for the entire West Midlands. Table 12.2 describes deaths amongst PCTs for the same time period.

Table 12.2: Death Amongst West Midlands Children under 16 years 2001 – 2006 by PCT

These deaths should ideally be calculated as death rates, however the author was unable to obtain synthetic denominator populations for the time period to calculate rates. One observation that immediately springs to mind is the relatively large number of deaths in Birmingham East and North (BEN) PCT and Heart of Birmingham Teaching (HoBT) PCT. This is in part a reflection of the youngish population found in these PCTs, however this may need further investigation.

There are slight preponderances amongst male children or female children amongst various ICD chapters.

Table 12.3: Death Amongst West Midlands Children under 16 years 2001 – 2006 by Gender

12.4 Discussion

This chapter describes in fairly simplistic terms the numbers of deaths amongst children across the West Midlands. It should be seen as a first tentative step for planning purposes of paediatric palliative care networks. Further work is needed on a condition specific analysis of various causes of deaths. In addition, most activity that relates to paediatric palliative care is either in an outpatient setting or in the community. This makes quantifying the health care service interventions very difficult.

The reader should note that the small numbers of deaths over the age of 5 years would make planning for paediatric palliative care amongst this group difficult and subject to small number variation. This makes commissioning across PCTs a more viable form of service provision.

Relatively large numbers of deaths in BEN PCT and HoBT PCT are apparent. This is, in part, a reflection of the relatively young population found in these PCTs. Nevertheless, this may need further investigation and looking at comparisons of deaths by ethnicity, deprivation, perinatal deaths etc to have a greater understanding of the epidemiology to inform public health and PCT commissioning. An ICD chapter by PCT breakdown for 2001 – 2006 is found in Appendix A.

12.5 Recommendations

• Further investigation of the deaths by specific conditions is undertaken as directed by the West Midlands Paediatric Palliative Care Network.


• Directors of Public Health to consider whether further analysis of deaths within their PCTs is needed.


• WMPHO to identify why there are so many uncoded death records.


• West Midlands Paediatric Palliative Care Network to consider the best way of capturing health service activity for paediatric palliative care patients.

References:

1. NHS Next stage review http://www.ournhs.nhs.uk/